Disease Management vs Disability Management

I’ve been thinking a lot about the distinctions of living with a chronic illness while also living with physical disabilities. These experiences are definitely interrelated, but they also have differences.

In my case, I had rheumatoid arthritis for a while before I had disabilities resulting from the disease. As I was diagnosed at age two, it was a number of years before my illness permanently harmed my mobility.

Throughout my life, I have worked to manage my RA to minimize my illness and disabilities. However, because I have had a severe form of the disease for many years, I have developed disabilities that also require management. By this I mean, using a motorized wheelchair to help with mobility and adapting my life to some of the physical restrictions I live with.

Impact of disease management and disability management on each other

However, I have to acknowledge that disease management and disability management do impact each other. They can overlap and bring complications to one or the other. An example is that regular exercise is important for managing RA, but I need to do adaptive exercise because of my disabilities resulting for the disease. I cannot run or bike, but I can do aqua exercises and strength exercises as long as I am careful about not straining myself.

As I have aged with RA, I have also experienced increasing physical limitations. My goal of disease management focuses on minimizing disease activity, but it also is important for me to be as comfortable and able to live the life I aspire to live.

This means that I don’t let my disabilities dictate my life. I may use a wheelchair, but it doesn’t stop me from working, traveling, and enjoying life with my husband, family, and friends. I may need to do things differently at times (such as needing a ramp or elevator instead of stairs), but I’m proud that I don’t generally see my disability stopping me from enjoying life.

In fact, I more frequently feel that it’s my RA that disrupts my life. It’s the sudden flares or fatigue attacks that can really mess with me. Sometimes I have to put life on hold to handle the challenges of my disease.

And while the RA treatments help to manage the disease (ideally), they also cause problems by making me susceptible to illness or throwing crazy side effects into the mix. It’s another wrench in disease management when you also have to contend with the challenges of the medications.

Managing RA is more challenging

Most people would probably see me and feel sorry for me because of my apparent physical disabilities. And I must be honest that it’s not always easy to live with disabilities because the world is not always an accepting or accessible place. But I definitely find the challenges of living with RA more difficult. When I encounter a physical barrier, I can use my wheelchair to get around it. When my RA flares, there’s not a lot that I can do.

The differences between disease management and disability management are sometimes subtle. But I think it’s important to tease these challenges apart, to better recognize and understand them. Only by knowing can we be better prepared to face them.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (7)
  • tanyarocks30
    9 months ago

    I lost my left leg to cancer when I was 8. I was diagnosed with RA in 2000. I have been very lucky with Enbrel being able to control my RA. My right foot has always been a problem as it’s the only one I have. I just had a cortisone shot in the big toe on Tuesday and they said it was osteo in the big toe. The last couple weeks my ankle has been swelling (and I sit most of the day). I feel like I’m always at the doctor and some of my friends call me a hypochondriac. As I type this I’m debating about calling my rheumy about my ankle (since I only have one,it’s probably a good idea) but then I think, maybe I’m over reacting. My being an amputee puts so much more strain on my foot/ankle/knee/hip joints it scares me about the future.

  • Kelly Mack moderator author
    9 months ago

    Hi tanyarocks30, I totally understand what you mean about preserving what you have. My right leg is stronger than my left due to RA damage and a knee replacement revision surgery, so I know that I put a lot of strain/stress on the right. We have to strike a balance of keeping active yet not harming the joints we do have! This not always easy. From my experience, it doesn’t hurt to contact your doctor about a concern as at least it puts it on the radar. Sounds like you are a very resilient person! Keep up the good fight! Thanks for sharing and sending good thoughts. Best, Kelly (RheumatoidArthritis.net Team)

  • Alesandra Bevilacqua moderator
    9 months ago

    Hi @tanyarocks30 and thank you for your comment. Wow, I commend you for enduring cancer as a child and now RA. I’m glad to hear the Enbrel is working for you. We definitely encourage you to speak with your rheumatologist about any new symptoms you’re experiencing so he or she can rule anything out. Please keep us posted if you’d like to share. We appreciate you being here with us! Thanks again for sharing. Warmly, Alesandra (RheumatoidArthritis.net Team)

  • CarolQ
    10 months ago

    I was diagnosed in January 2008 after I was hospitalized with meningitis. It was so bad at that point I had to be in a wheelchair. They told me I’d never walk without some sort of assistance again. It was extremely difficult for me because I was very athletic. I had no skills as far as working aside from retail and restaurants. I was so lost.
    On the other hand, I was old enough to say what hurt and where. I can’t even imagine being a toddler like you and having to deal with what we deal with.
    At least I beat the odds and (most days) can walk on own two feet with no assistance. I have constant flares though and also have Fibromyalgia, plus a plethora of other issues.
    I commend you for being able to live with this horrible disease for so long. Some days, I almost wish the Meningitis would’ve taken me, then I read or hear inspirational stories like yours.

  • Kelly Mack moderator author
    9 months ago

    CarolQ, thanks for your kind words and sharing your story. You are definitely resilient! Keep on fighting! I really appreciate your support. Hugs, Kelly

  • Lawrence 'rick' Phillips
    10 months ago

    It is like when people ask me which is worse diabetes or RA. I say hands down it is RA. This often surprises them. They usually say oh i hate food restrictions and needles and and those awful finger pricks. I tell them those are things you see, but RA is something you cannot see.

    Neither of these are good, but at least with diabetes I have real tools that I use to control how I feel. With RA, I cannot see direct result of treatment. Seeing cause and effect makes it better for me.

  • Kelly Mack moderator author
    9 months ago

    Your perspective is really helpful, Rick. Thanks so much for sharing your thoughts–really makes sense to me. Not seeing or being able to control the RA is definitely a challenge. Hang in there! Best, Kelly

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