Being diagnosed with osteoporosis can be a confusing and frightening time and it is important to know that you are not alone. It is also common for those with osteoporosis – as well as their support network – to be in denial of this “silent” disease as there are typically no symptoms until a bone is broken!

Many may question, “Why and how did this happen to me? How will this impact both my daily activities and my long-term health? What steps should I take to reduce my fracture risk? Can I improve my bone health? Will this impact my intimate life? How will I manage the pain of my fracture?”

Oftentimes, we have hit the wall, felt angry, depressed or experienced other feelings and not known where to turn for support. Be patient and give yourself time to learn about osteoporosis and how it will impact you. Individuals who have osteoporosis share their learnings and strategies and find Osteoporosis Canada resources to help you live your fullest life possible.

Your first priority is to take care of yourself! Identify who should be part of your healthcare team

Don’t let denial get in the way of looking after your health. Identifying your healthcare team is your first and most important step. Each person’s situation is unique and is based on many factors such as overall health, age, medical history, and lifestyle. There is much research and advances in osteoporosis treatments happening and by working with your healthcare team, you can learn and implement personalized approaches and treatments to help monitor and improve bone health, reduce the risk of fractures, exercise safely, and improve your well-being.

Reach out to your personal support network

Talking with those close to you about your situation can help you to overcome any anxiety or fear that you have. A support network is also important when you need practical help whether that be support with daily chores, shopping, lifting or moving objects. Since others can’t see that you have osteoporosis, it’s important to let them be aware of your diagnosis and to ask for help when needed.

Get educated and join a program and/or support group

Making a list of questions you have in advance of meeting with your healthcare team can often be helpful. Consider having a family member attend your appointments with you, which will help educate them while also being there to help document important information and instructions.

If you use the internet to research information about osteoporosis, take care that you are consuming credible and reliable evidence-based information as there is so much inaccurate and conflicting information about this disease. For reliable evidenced-based information and support take time to go through the Osteoporosis Canada site where you will find a wealth of resources including programs and support groups to help you in your journey.

Progress over Perfection

Depending on your personal circumstances you may need to modify your activities and hobbies. 

Take time to breathe and adjust to your new reality. Creating an action plan with small daily steps can add up to a lot of change.

Steps you might take could include:

• Realizing that chores do not need to be done all at once – pace yourself appropriately
• Educating yourself about osteoporosis and how to support bone health
• Modifying exercises and focusing on increasing balance and strength to reduce falls and fractures
• Reaching out for help from those close to you
• Keeping a journal or calendar to track your medication/s, progress, and actions so far
• Finding new hobbies and activities that align with your interests and capabilities

Advocate for yourself

Acknowledging and accepting that you have changed and that you have an increased risk of fracture is one of the most important steps you will take. From there, it is important to advocate for yourself – to get the support you need whether that be in the form of expanding your healthcare team or asking for help with daily activities. Remember that unless you share your situation with others, they will have no idea that you need help – so speak up!

Wherever you are on your personal journey, realize that you are not alone. Make an action plan and plot a course to take care of your health and well-being.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Osteoporosis is a common but often overlooked disease in men – a broken bone may be the first sign you have it. Often, osteoporosis in men can be secondary to an underlying cause, be it a pre-existing condition, lifestyle-related factors, or certain medications.

Men at Risk – Shocking Numbers That Demand Attention

According to Osteoporosis Canada, at least one in five men will break a bone as a result of osteoporosis. Men account for 25% of the 30,000 hip fractures caused by osteoporosis in Canada, and 33% of them will die within one year. Men are also less likely to receive any intervention after experiencing an osteoporotic fracture. A Canadian multi-centre study showed that 90% of men with fragility fractures remained undiagnosed and untreated for osteoporosis¹. According to Statistics Canada, of the patients that received osteoporosis management care, men were 3.6 times less likely to have a BMD test and 4 times less likely to receive osteoporosis treatment than women. Hip fractures that are associated with osteoporosis are known to be a sign of an increased risk of future fractures. Studies have shown that less than 25% of male patients received medication to prevent a future fracture after a hip fracture. In contrast, 80% of male patients received medication to prevent a future heart attack after an initial incident^2,3. 

“Men, far too many men, get osteoporosis too…. the fragility fractures I had been receiving were the most obvious but far too often missed warning of osteoporosis.”

– Larry Funnell, a man living with osteoporosis and COPN member

Important Considerations for Men Who Might Be at Risk of Osteoporosis:

1. Get assessed. It is not normal to have a fragility fracture, to break a bone from a minor fall or standing height.

Who should be assessed for osteoporosis and fracture risk?

• Men (and women) taking certain kinds of medication(s) that may increase bone loss and/or fall risk. For instance, the long-term use of glucocorticoids can interfere with bone formation. Glucocorticoids are used to treat various medical conditions such as rheumatoid arthritis, COPD, and asthma, among others;
• Canadians 70 and older are considered to be at increased risk of osteoporosis or fractures;
• Canadians under the age of 70 who have already experienced a fragility fracture or who have additional risk factors for fracture;
• Men who have hypogonadism (low levels of testosterone that lead to low bone mass);
• Men being treated with androgen deprivation therapy for prostate cancer. This therapy can accelerate bone loss to a rate similar to that of menopausal women. Androgens are essential for developing and maintaining bone mass;
• Men (and women) whose lifestyle habits (such as the high daily consumption of alcohol) negatively impact their bone health. Research shows an increased risk of osteoporosis for those who regularly consume 3 or more alcoholic drinks per day. Increased alcohol intake also contributes to an increased risk for falls and is often associated with poor nutrition.

2. Educate yourself about osteoporosis. Osteoporosis Canada’s website, National E-Newsletter and the COPN “Unbreakable” E-Newsletter provides timely, science-based information on how to live well with Osteoporosis – including treatment, nutrition, exercise, support and much more.

• Talk with your healthcare provider to determine your risk of osteoporosis.
• Speak with your pharmacist about any possible contraindications of medications you are taking that may affect your bone health.
• Have a conversation with your physiotherapist and/or occupational therapist about fall prevention, strengthening, how to safely move your body, safe lifting etc.
• Learn to exercise safely. Keeping fit is important to maintaining and supporting bone health

3. Communicate openly. Talk to those around you about osteoporosis

• Ask for help when you need it to prevent placing unnecessary stress on your bones. You may not “look” like you need help, but few will refuse when you say something like, “Excuse me, would you be able to lend me a hand?”
• Most of us want to help others, but when you are asked to help, consider doing so without the heavy lifting. You might say, “I would love to help you, but I am unable to do the lifting. Let me find someone who can.” Openly sharing your knowledge of osteoporosis will help reduce the stigma men living with this disease may feel and could open the door to help others who may be at risk.

Communicating openly gives you the opportunity to talk about osteoporosis so you can help others gain a better understanding of this disease.

4. Seek treatment.

• Bisphosphonates and denosumab have been shown to reduce the risk of vertebral fractures in men.
• There is no evidence that testosterone reduces fractures in men.
• If your doctor has recommended medication for osteoporosis, talk to them or your pharmacist to find the best option for you. 

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

References:

1. Papaioannou, A., Kennedy, C. C., Ioannidis, G., Gao, Y., Sawka, A. M., Goltzman, D., Tenenhouse, A., Pickard, L., Olszynski, W. P., Davison, K. S., Kaiser, S., Josse, R. G., Kreiger, N., Hanley, D. A., Prior, J. C., Brown, J. P., Anastassiades, T., Adachi, J. D., & CaMos Research Group (2008). The osteoporosis care gap in men with fragility fractures: the Canadian Multicentre Osteoporosis Study. Osteoporosis international : a journal established as result of cooperation between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA, 19(4), 581–587. https://doi.org/10.1007/s00198-007-0483-0

2. X. Canada PHA of. Government of Canada [Internet]. / Gouvernement du Canada; 2022 [cited 2023 Jun 15]. Available from: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/osteoporosis-related-fractures-2020.html

3. Y. Austin PC, Tu JV, Ko DT, Alter DA. Factors associated with the use of evidence-based therapies after discharge among elderly patients with myocardial infarction. Cmaj. 2008 Oct 21;179(9):901-8.

Credit to: Dalton Budram MD, BSc (PGY-1 Internal Medicine, UofT).

COPN – the Canadian Osteoporosis Patient Network (COPN) exists today due to the dedication and perseverance of four pioneering women: Sheila Brien, Priscilla Coles, Ina Inse and Gail LeMieux.

Since 2004, this community has been a strong voice for Canadians impacted by osteoporosis, advocating for improved care and offering essential support and reliable information. Thank you to all of our members, both past and present, who have shared their time, energy and lived experience with us. We cordially invite you to join us in commemorating COPN’s 20th anniversary.

In the early 80s, support for osteoporosis patients was frail – there were no medications, limited information and few, if any support groups for patients. It is during this time that a few women patients from St. Michael’s Hospital in Toronto came together to create a support group which eventually formalized to become Women and Osteoporosis.

In April 1998, the group realized that they had synergies with Osteoporosis Canada which operated nationally. So, Women and Osteoporosis joined forces with Osteoporosis Canada.

In 2002, Priscilla Coles, a volunteer for Osteoporosis Canada, had an epiphany. She realized that patients needed more say in their treatment and met with other founding partners, Sheila Brien, Gail LeMieux and Ina Inse, to discuss how patients could unite with a national voice to have more of a say in their treatment. These women had all suffered fractures and understood first-hand how osteoporosis could create life changing situations, loneliness and frustration from a lack of information and resources. Their spark was lit – and united, these women set out to create a community and make a difference for others with osteoporosis. They did not want anyone, regardless of their geographic location, to feel ALONE.

As volunteers and speakers, they started in Toronto, and then, reached out to others in smaller communities to provide support. Their mandate was to share experiences and provide patient insight, influence decision makers and provide the patient perspective. A patient focus and a patient voice became their driving force.

In 2004, The Canadian Osteoporosis Patient Network (COPN) was sanctioned as the patient arm of Osteoporosis Canada by the Board. With the support of OC, a dedicated web page for COPN and a patient newsletter was launched providing more support to patients and caregivers, eventually creating a virtual community across Canada.

In the early days, while budgets were slim, COPN focused on distributing information to support groups, doctors, and hospitals. As well, COPN hosted seminars recruiting members at these meetings and increasing membership through word of mouth. By 2009, COPN was 1900 members strong. While their milestones are many, one very important milestone COPN achieved was working with the University of Waterloo’s Kinesiology Department to publish a series of exercises called Too Fit to Fracture – this was a landmark resource available to help those who had recently fractured.

This year, COPN is celebrating its 20^th anniversary!

COPN remains committed to:

• Leading with our patient voice
• Connecting those affected by osteoporosis with evidence-based information and resources
• Advocating for improvements in osteoporosis care
• Supporting and inspiring those living with this disease

From 2004 through 2024, COPN continues to be true to our founders’ vision:

All Canadians affected by osteoporosis live well and live safely.

Priscilla, Gail, Ina, Sheila 2004 COPN Founders

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Our family and friends can form a valuable support team for us as we work through the challenges of living life with osteoporosis. They can be both cheerleaders and caregivers who provide us with encouragement and assistance when we need it. 

In this article, we will explore practical strategies you can use to help build and educate a personal support network you can rely on. Your network – the people you spend most of your time with every day – may not have a good understanding of what osteoporosis is and how it impacts your daily life and activities. We’ve been in this position, and we are here to help by sharing ideas about how to talk to your family and friends (as well as acquaintances) about your osteoporosis and how to ask for support when you need it.

Why is this important? Living with osteoporosis is an emotional and physical journey that lasts a lifetime, so it’s important to have a support team that you can rely on and feel comfortable talking with during your journey. 

10 strategies to help your support network learn the about osteoporosis:

There are many ways your support team can learn about osteoporosis. Some may prefer to read reliable information, while others would rather talk with you, listen to podcasts, watch webinars or participate in your appointments. Sometimes, a member of your team may not understand how serious osteoporosis really is. Education is the key. Here are some ideas to help you begin to build their knowledge base and get support.

1. Share articles from the Osteoporosis Canada website where you’ll find important evidence-based articles about this disease such as:

• What is osteoporosis? What is it not?

• Risks or limits for those with osteoporosis

• Facts and stats on osteoporosis

2. Invite someone from your team to join you at your next healthcare appointment to learn more about your treatment and specific needs. Encourage them to ask questions. Don’t forget that the professionals on your healthcare team are also part of your larger support team. These healthcare professionals may include your doctor, pharmacist, physiotherapist, dietician and/or other specialists who support you.

3. Listen to a webinar or podcast together that discusses osteoporosis and some of the important lifestyle changes that you may want to make to help you avoid fractures.

4. Print reliable resources about osteoporosis and share them with team members who prefer to read the information.

5. Invite them to join you in the exercises you are doing to improve your bone health and prevent fractures. This is an excellent opportunity to discuss how osteoporosis affects you and what you need to do to keep safe.

6. Cook together and discuss the importance of a nutrient rich diet for bone health. Join an online cooking webinar with Osteoporosis Canada and view their many recipes online.

7. Teach your family and friends about your diet, exercise, precautions, and routines. While they may not have osteoporosis, you can help them support their bones by paying attention to their own health. Discuss the importance of exercising to create strong muscles, improve bone density as well as balance to prevent falls. Also, help them learn about the importance of calcium and vitamin D to maintaining healthy strong bones.

8. Let them know that managing your osteoporosis is important for your physical and mental well being. Tell them how much it means to you to have them there to talk to and learn how this disease impacts you.

9. Share what you are working on to live well with osteoporosis. This might include exercises to improve your bone strength and balance, a well-rounded diet, and changing how you do daily activities to lower fracture risk.  

10. Ask them to help you create an “elevator pitch” to briefly summarize what osteoporosis is and how it affects you. This might be helpful if you are in a situation where you need to avoid an activity that puts you at risk of a fracture or have to ask for help. For example, you could say,  “I have osteoporosis – my bones can break if I  ____________ . Will you help me? You could use this “pitch” when you are at the airport and need assistance lifting your luggage from the carousel or are at home and need someone to get the turkey out of the oven.

Let family and friends know how they can help you:

Tell the people on your care team exactly how they can support you. Some examples include: getting grocery bags in and out of the car, ensuring meals are rich in calcium, shovelling snow/salting outside in the winter, removing tripping hazards (such as area rugs) from the floor, installing grab bars in the bathroom or railings in all stairwells. 

Support can also involve talking and providing emotional support when you need it. We understand that talking with family members and friends about osteoporosis isn’t always easy. These practical suggestions can help you  open the door to conversations about living with this disease and build a support network around you that you can count on. Be sure to visit the Osteoporosis Canada website, where you will find a wealth of evidence-based articles, podcasts and tools that you can share with your family and friends such as:

• OC Blog https://osteoporosis.ca/news/oc-blog/
• Unbreakable the OC Podcast https://osteoporosis.ca/oc-podcast/#podcast-episodes

We invite you to forward and share this article with your support network or anyone that you think would benefit from this information. Join our community by subscribing to this e-newsletter and learn more about the resources available from Osteoporosis Canada.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Living with osteoporosis is a unique journey for each of us. For those with mild osteoporosis there may be little impact on how you live – while for others with more severe osteoporosis, it may require us to modify daily activities.

Whatever our fracture risk, it is important that we take care of our health and well being. Having osteoporosis may require us to think in different and creative ways about how we do our daily activities- this is part of our journey.

1. Be kind to yourself

Living with osteoporosis may bring unique physical and emotional challenges, so it is important to be kind to yourself. Practicing self compassion will help you move forward on your journey. Remember to:

• Take things one day at a time and recognize that you are doing your best.
• Celebrate the little things you accomplish throughout the day by doing something you enjoy.  
• Take time for self-care activities like exercise, nutrition, and good sleep.  

2. Focus on your mental well-being

Mental well-being means empowering yourself to be your best by keeping engaged, enjoying activities you care about and maybe even finding new ways to enrich your life. There are various aspects to your well-being including: 

• Mental health – This includes your emotional, psychological, and social well-being. Having good mental health enables you to better cope with stress and learn and work well. Nurture your mental health by being socially connected, challenging yourself intellectually, getting involved in activities that are meaningful to you, and sharing your concerns with your medical practitioner.  
• Social engagement – Being social helps you build meaningful relationships with others and your community. Engaging in social activities can help you develop a sense of purpose and belonging.
• Emotional well-being – This involves managing your emotions to gain control, minimize difficulties, and reduce stress. Ways to help you regulate your emotions include breathing deeply, taking a walk, meditation, and exercise. 

3. Protect your energy levels

It can be challenging to thrive when you are feeling tired, exhausted, and/or overwhelmed. Lacking energy understandably has an impact on your daily activities. Here are some ways to help you manage, boost, and protect your energy levels:

• Balanced nutrition – Eat a well-balanced diet that provides essential nutrients for energy production in your body. Think fruits and vegetables, whole grains, lean proteins, healthy fats and foods with bone building nutrients including milk products and fortified alternatives. Consider having your groceries delivered or ask a friend or family member to help, as they can be heavy to carry and drain your energy. 
• Adequate rest – Try to have a regular sleep routine in an environment you find comfortable. If you are having trouble sleeping, try some gentle stretches before bedtime. 
• Energy conservation – Pace yourself when going about your day, take rest breaks, ask for help, prioritize your tasks and give yourself permission to leave some tasks for another day. Alternate easy tasks with more difficult tasks and save the most challenging tasks for when you know you will have more energy. Take larger tasks and break them up into smaller ones – don’t do them all at the same time. Position yourself in a comfortable and safe way when performing your tasks. Keep objects in cupboards within an easy reach. 
  
  

4. Protect your physical health

As those of us with osteoporosis know, physical health is important to maintaining healthy bones and preventing future fractures. No matter what your capabilities are, consider these important factors:

• Regular physical activity – Any activity is better than none, including low-impact exercises like walking, swimming, tai chi, or gentle yoga. Please check with an osteoporosis trained health professional to ensure you are moving safely during your exercises. 
• Preventive care – This includes routine self care activities such as regular exercise, nutrition and good sleep. This also includes avoiding smoking and limiting alcohol consumption. Attending regular appointments with your healthcare practitioner for health screenings and addressing any new issues is also important.
• Safety and independence – Avoid physical activities that put you at risk for a fracture such as lifting heavy objects or walking on slippery surfaces. Continue to do osteoporosis safe exercises for increased strength and balance which further reduces your risk of falls and fractures. You can create a safe environment at home that minimizes the risk of falls. For example, wear proper footwear, install grab bars in the shower, remove slippery area rugs, and use a grabber to pick things up.  Don’t hesitate to ask for help when needed.  
• Pain management – Especially while recovering from a fracture, reducing your discomfort through things like medications, assistive devices, and physical therapy can be helpful. 

Remember: You are more than your diagnosis!

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Special Credit to: Cristian Garcia, MSc, MD Candidate.

Sleeping well is vital for our overall health and well-being. The Public Health Agency of Canada recommends adults get 7 to 9 hours of sleep, however, getting quality sleep as we age can be harder due to medications and health issues. Quality sleep is just as important as regular exercise and a healthy diet. 

Osteoporosis can affect the quality and quantity of our sleep. Sleeping positions that used to be comfortable may now cause us discomfort or not give us adequate support. We may find ourselves tossing and turning or worried if some sleep positions are causing us harm.  Thankfully, there are ways to improve our sleep positions that provide support for our bodies and improve the quality of our sleep. 

What sleeping positions are best for your body? 

Spine alignment in a “neutral” position without putting any strain on your other joints is the key. A “neutral spine” is when the head is positioned so that the ear is over the shoulder and the shoulder is in line with the hip joint. Use this posture when you’re sitting, standing, or lying down too. Whether you are a side, back or stomach sleeper, your goal should be to stay in this neutral position as it lengthens your spine and protects its natural alignment.

The fetal position (curling up) may be your favourite way to sleep, but it can cause strain on the back of your neck and make the spine curve forward which also strains your vertebrae. If this is one of your favourite sleeping positions, gently and gradually practice elongating your spine into a “neutral” position. If you are a daytime napper, think about what position your body is in, especially your head and neck. Is your spine in a neutral position? The same applies to napping, whether you are sleeping in bed, on a chair, on a sofa or in the car. Change takes time; be patient with yourself and listen to your body. 

How do I choose a mattress to support my osteoporosis? 

If you live with osteoporosis, an ideal mattress would be one that provides you with good spinal support in a neutral spine alignment without causing pressure on your joints.  The “best” mattress is debatable and each person should test a mattress before buying.

Medium-firm mattresses may help with lower back pain, and be easier to shift around in. A firm mattress may cause discomfort for some at the hips and shoulders. Innerspring (coil spring) and memory foam (all-foam) are the most common and affordable mattresses. Foam mattresses “cradle” the body more, adapt to body temperatures, and if too soft, may make it challenging to shift around in.

A restless sleeper may benefit from an innerspring mattress to allow movement without disturbing their partner. Consider the bed’s assembled height as it may be a risk if the bed is too high or too low. Your feet should be able to rest on the floor while sitting on the bed to avoid sliding off.  Think about your room size and space on both sides of the bed to safely get in and out of the bed.

What pillow is best for osteoporosis? 

The purpose of a pillow is to keep your head and neck aligned in a neutral position while you sleep. The first step in choosing a pillow is to determine your dominant sleep position – the position you usually fall asleep in. 

Back sleeper: Choose a pillow that cradles the head and supports the natural curve of the neck. Place another one under the knees to flex the knees and relieve spine tension.

Stomach sleeper: Choose a thin, “scrunchable” pillow since your face is very close to the mattress. Keep in mind that in this position, the head is turned to the side most of the night adding strain to your neck and spine. 

Other things to consider when buying a pillow are:

• Test the firmness of pillows by using the squeeze test – the harder you have to squeeze to flatten it, the firmer it is;
• Consider hypoallergenic pillows and check the breathability and heat retention of the materials if you have allergies. 
• Purchase a pillow with a good-quality cover, and if in doubt, consider buying a pillow protector that can be washed. 

Overall, the best pillow for you fills the space between your shoulder and head so they are neutral.    

“Comfort is very subjective, but when the head and neck are aligned in its best neutral position and is well-supported for sleep, you will awake more refreshed.”

– Sharron Steeves, retired physiotherapist

Where should you go to receive more advice from a professional?

You and your doctor can discuss your needs and options. Often a physiotherapist or occupational therapist can assist you by assessing your ideal neutral spine alignment for sleeping.  

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Osteoporosis can have a significant impact on our physical and emotional well-being including how broken bones and the diagnosis of osteoporosis can affect our sexuality and intimacy.

Sexuality can be about how you identify sexually and who you are physically, emotionally, and spiritually attracted to. Being sexual can be more than having sex, and can include touching, kissing, flirting as well as having sex.

Intimacy can be emotional and/or physical, may or may not include sex and can be about feelings of closeness, emotional connections and feeling supported in a personal relationship.

Two people can be very intimate and involved in a social and emotional context (e.g. best friends) yet never sexual with each other. However, two people can be very sexually involved but never intimate with each other. Many relationships are both sexual and intimate.

Communication is key:

When one partner is affected with osteoporosis, it impacts both partners in a relationship physically and emotionally. Good communication with your partner is essential; it should be honest and ongoing and include personal beliefs, fears, expectations, and the relationship as a whole. It will ease and support a transition to a new type of sexuality. A technique or a position may not be acceptable to both partners, as some positions may put too much pressure on the partner’s osteoporotic bones. These intimate details, unique to each couple, need to be discussed before adaptations can be made with respect to pain and fracture risk.

Important details to discuss with your partner include:

• Fears: Fear can act as a barrier to intimacy and sexual activity. Partners may have fear around rejection of intimacy. Many people fear rejection from a partner who perceives or experiences a decline in affection or intimacy. You may also fear getting hurt or hurting your partner with certain positions. There is also the fear of performance failure due to medications, depression, anxiety, and other factors.
  • Your partner may have the same fear as you. It is good to share your thoughts and feelings so that both you and your partner can help each other navigate these fears.

• Self-image: Living with osteoporosis can make us feel less attractive and less confident in our bodies. We may not want to be intimate with our partner if we are not comfortable in our own skin.
  • You may be both surprised and delighted to find that your partner still finds you as sexy as ever and looks forward to the increased intimacy that overcoming these challenges together will bring.

• Pain: The severity of osteoporosis, fractures, aches, and poor mobility can impact your sexuality and/or intimacy.
  • Be creative, use any safe additional support that might help and go beyond intercourse.
  • Find positions that are safe and more comfortable for everyone involved depending on the severity of the osteoporosis and the fracture risk – avoid putting too much pressure on osteoporotic bones.

Talk about your fears and concerns with your partner. Recognize that there has been a change and move towards realistically accepting these changes in your life.

For example, what is interfering with your intimate or sexual activity? Then share your thoughts. It is important to talk about what you miss. Talk about what your needs were before your diagnosis, and how these needs may have changed. Talk about what you and your partner can still hope to get out of the relationship. Find out how your partner feels about the changes in your body.

Remember that sexuality and intimacy are not just about having sex. There are many other satisfying ways to be both sexual and intimate. You may need to do some problem-solving to identify these other ways. You may also consider talking to a healthcare professional to help you navigate intimacy and sex with osteoporosis. Often just holding, massaging, kissing, or caressing can be pleasurable and create a feeling of intimacy. Many of us believe that good, passionate sex must be spontaneous, but many experts advise that planned sex is just as rewarding. Planning is often essential for people living with chronic pain or experiencing fatigue that may result from the pain. Consider the time of day when you are most likely to feel energized and the time when your medications may be providing the best pain relief. Make this journey of discovery part of the fun.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Support groups, one of the online programs offered by Osteoporosis Canada, are all about connection. They connect people who not only live with osteoporosis but want to live well with osteoporosis. Each monthly meeting is another opportunity to share knowledge and concerns, to encourage each other — and to just plain spend time with people who know what you’re talking about, because they are in the same situation.

Feedback describes how powerful group participation can be:

• “It’s wonderful to connect with people who share the same experience.”
• “I feel privileged to take part in a group. This is a lonely disease if you don’t have a support system.”
• “I feel so much more confident now, armed with the knowledge, support and friendship I’ve been given over the past year.”

The Basics

OC’s support groups are managed by Sandy Owczar and Cathy Pearcy, the organization’s two Managers of Community Engagement. Though all groups meet virtually rather than physically, they are with two exceptions broken into regional categories. “This allows discussion in each group to be specific to its own context,” explains Cathy. She adds that the two non-regional categories — Under 40, and Men With Osteoporosis — are also context-specific. “Men face some different issues than women do, often work-related, and people under 40 are also in different circumstances because they are still in the child-rearing and career-building stage of life.”

Each group holds a one-hour meeting every month, via Zoom. A few groups are coordinator-led; most are facilitated by a trained volunteer who either has osteoporosis or has a close connection. Membership is free, and people may remain part of a group as long as they wish.

How to Join – and When

How to join is straightforward. Click the support-groups link shown below; click the appropriate category; and fill in the pop-up email addressed to one of the Managers. Include some basics about your location, circumstances, and diagnosis, both what it is and when your diagnosis was received.

When to join a support group is not as obvious as how. The Managers want to know about your diagnosis, because that information tells them where you are on your journey with osteoporosis. Says Sandy, “That helps us suggest which OC resources will be most useful for you right now.”

Brand-new diagnosis? Call the OC telephone support line; register for any or all of the online webinars (Bone Health 101; Osteoporosis and You; Living Well With Osteoporosis).

Once you’re past that first shock, once you have acquired some information and you feel ready to explore how to live well with the disease — this is the time to consider a support group. Members themselves decide what topics to discuss and are free to participate as much, or as little, as they wish.

It’s your personal journey, but you might like some companionship along the way.

Support groups: https://osteoporosis.ca/support-groups/

Other online programs: https://osteoporosis.ca/programs/

Telephone support: 1-800-463-6842 (Canada only)

Reaching Out: A Support Group Story

After my diagnosis, I felt angry, scared, and overwhelmed. I had just moved to a small, rural community while the pandemic was in full swing and was feeling lonely and isolated. At my doctor’s suggestion, I went to the Osteoporosis Canada (OC) website to learn more about this disease. I discovered so many new things but had lots of questions.

One day, as I was checking out the OC website, I found the “Get Involved” section on OC’s homepage. I moved my cursor over it and spotted, “Get Support” and “Support Groups” in the drop-down menu. I clicked on “Support Groups”, read the description, and knew right away that I had found what I was looking for: a way to connect with others who had osteoporosis while keeping myself safe during the pandemic. I clicked on the group in my area and sent a short email to the address that was provided. I had a very friendly and quick reply from the group’s manager and attended my first virtual osteoporosis support group meeting shortly thereafter. It has been 16 months and I’m still there!

I was a bit nervous about attending my first meeting, especially because it was on Zoom, and I’d hardly ever used this platform before. But the welcoming and supportive group helped me learn the basics of Zoom. They made it easy. I listened closely as people shared their thoughts and experiences.  Some group members had faced multiple fractures, and some were still recovering from them. Others, like myself, were fortunate enough not to have had any fractures (my fingers are still crossed). I was glued to their every word, hoping to figure out how to avoid having a fracture or what to do if I did.

A lot of learning has happened since then and I’m still “glued” to their every word. Sometimes, I even share my own bits of what works for me. Here are some helpful things I’ve learned from my support group:

• Change can happen over time. Changing too many things at once can feel overwhelming.
• Scatter exercises throughout the day, doing bits at a time. You can even do some balance or strength training while you are brushing your teeth or waiting for the kettle to boil!
• Sitting is really hard on the spine. Find ways to get up and move around every 30 minutes.
• Give your spine “time off” in the day. Lay on your back on your bed (or the floor) for 10-20 minutes.
• Use walking poles to help you get the weight-bearing and cardiovascular exercise you need without putting too much pressure on your joints.

You don’t have to be alone with this disease. You can reach out and get connected with others who understand what you are going through. You can join one of Osteoporosis Canada’s support groups today!

Warmly,

Jackie Herman

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

“Patient engagement” is a concept that first appeared around the year 2000 in the United States and is now a growing movement in many countries, including Canada. The core idea is very simple: the patient voice matters.

Dedicated Osteoporosis Canada volunteer Christine Thomas is one of those voices. She not only lives with osteoporosis, but she is also an author and an advocate for meaningful patient involvement in disease research and management.

Christine’s experience is grounded in her volunteer roles with Osteoporosis Canada’s patient group COPN, and the Institute of Musculoskeletal Health & Arthritis (IMHA) of the Canadian Institutes of Health Research (CIHR), where she is a Patient Engagement Research Ambassador. 

“With meaningful patient engagement, we patients are no longer the passive recipient of decisions made by others. We become active participants in shaping those decisions.”

Christine adds that “patient” here means caregivers and family members as well as the person living with the disease — in other words, all the people directly affected by its impact.

Types of Patient Engagement

There are two main ways to become engaged as a patient.

The first is with a research project, as research used to be generally carried out on patients – but not with patients. Now, patient partners can help set priorities, develop research questions, conduct some of the research, and participate in sharing the results. Patient engagement leads to more relevant research priorities and recommendations. For example, Christine is one of the patient partners working on the update of the Osteoporosis Canada Clinical Practice Guidelines for the diagnosis & management of osteoporosis in Canada. 

The second way to engage is for personal benefit as more and more institutions offer an online patient portal. For example, The Ottawa Hospital has MyChart – an online portal which gives patients a tool, allowing them to take an active role in their own health care —including tracking appointments, visiting summaries and test results, and then using this information to help shape their daily behaviour and prepare for future appointments. These portals which drive patient/provider engagement are an important first step towards shifting healthcare from a reactive model to one that embraces proactive and preventative healthcare at the primary level.

Ways to Engage

Would you like to raise your voice and be more engaged? Here are some suggestions:

• Watch out for appropriate research projects and consider applying to take part.
• Join any patient portals being offered by your own healthcare institutions and make active use of their opportunities.
• Consider sharing your own story with other osteoporosis patients. You can submit your story on the Osteoporosis Canada website here.
• Join a support group about how to live well with osteoporosis and to begin networking with others. Learn more here.
• Learn about the IMHA here.

Christine Thomas knows the benefits of patient engagement firsthand.

“My voice matters. Your voice matters. Every patient’s voice matters.”

Whichever way patients engage, they benefit. They learn more, do more and feel empowered. Engaged patients make better decisions for themselves and they help researchers make better, more relevant decisions that benefit others as well.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.