Social Support for People Living with Chronic Illness

There is a direct correlation between mental health and social support systems. Social interaction is suitable for both the brain and the body. For those with a chronic illness, having a sound social support system directly correlates to better mental health outcomes. We all need people who love, encourage, and help us grow, but it is essential for people who struggle with medical conditions.

Unfortunately, many people who struggle with a chronic disease or injury withdraw from others. It is a natural tendency to try to "shrink" one's world when feeling overwhelmed by things like medical issues. When a person's mental, physical, and emotional energy becomes limited, and it's hard to cope, they focus on a few priorities and often let go of things like the friendships which make up much of their social support system. Although conserving one's energy is a wise idea, staying plugged into and increasing one's support system is critical when a person has a chronic medical issue. Ideally, a person should have people with whom they feel comfortable discussing their illness and people who help to distract them from their condition.

Not everyone in your support system is going to understand or be able to empathize with you. Not everyone you want (and even need) to be supportive will know how to do so. People may say things that frustrate you, such as, "you just need to eat better and exercise," or, "It's all in your head." Unfortunately, there will be people in your life who just don't "get it." If your spouse falls into this category, the two of you should go to couples counseling as soon as possible to help them understand how to support you. If a friend or other family member falls into this category, sometimes it is best to avoid the stress of getting them to understand. It is ok, and often for the best, to have people with whom you don't discuss your disease. These can be the friends and family who help distract you from your condition and your symptoms. Viewing them in this way can help prevent resentment. Try to be proactive in these relationships by arranging the time you spend together around fun and distracting activity. Accept that they have some limitations and try to make sure your interactions with them provide something positive for both of you.

Another essential part of a support system is finding people with shared experiences. This can only be provided by other people with the same (or a similar) chronic medical condition. Ankylosing Spondylitis and MANY other auto-immune and chronic inflammatory diseases are rare conditions, making it difficult to meet people who have them outside one's doctor's office. Fortunately, there are many support groups available both online and in-person. Although many feel uncomfortable with support groups, they are genuinely beneficial assets in your support systems. Not only will support group members be able to understand precisely what you are going through (and listen), but they can also give advice. When starting a new medication, it is reassuring to ask the group about their experiences with it, especially for things like methotrexate, biologics, hydroxychloroquine, and steroids. It is essential to only take medical advice from your doctors, but often, support groups can suggest things to discuss with your doctor. They have proved invaluable to this author in terms of emotional support and advice for living with Ankylosing Spondylitis.

Some of the best support groups this author has found are through Facebook pages. The advantage of these groups is that people can join from anywhere, resulting in thousands of members. The feeling of community in these groups is difficult to describe, but it is immensely comforting. Being able to post a message on days when you are struggling and receive hundreds of responses of encouragement and prophylactic techniques does genuinely help. The pages I have mentioned are below.

Ankylosing Spondylitis

Our Daily Life with Ankylosing Spondylitis

If you have a chronic illness besides Ankylosing Spondylitis, try searching Facebook groups for your diagnosis. Many support groups exist for chronic diseases on social media. In the age of TikTok, social media influencers and even professional athletes who have chronic illnesses create content to raise awareness. Sometimes these sources can be an excellent way to educate your loved ones about your condition.

These groups have been much more difficult to find since the COVID-19 Pandemic. If you prefer an in-person group, try asking your specialist (rheumatologist, gastroenterologist, etc.). Foundations and national organizations are also great places to search. For example, the Spondylitis Association of America has a support group network and opportunities to get involved. A google search for non-profits related to any illness is an excellent place to start finding support.

Another excellent source of in-person support is Meetup.com. You can search for support groups or for groups by diagnosis. Not only do these groups provide support, but many of them also meet for fun activities. Making new friends who struggle with the same or similar issues is an often-undiscussed part of one's support system. Everyone with a chronic illness knows what it is like to cancel plans because of feeling unwell or in pain. While many friends and family struggle to understand, friends with the same illness will understand.

Watch the YouTube video below to learn how our experienced Sacramento injury lawyers are fighting for the rights of injured Californians.

If you are struggling with a chronic illness due to an injury sustained in a car crash, call our personal injury attorneys for free, friendly advice at (916) 921-6400 or (800) 404-5400.

See our past case history of Verdicts and Settlements.

Photo by Hannah Busing on Unsplash

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