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12 Things People With a Degenerative Disease Wish You Knew

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When you live with any sort of health condition, it can be difficult for your friends and family to really get it. Yeah, they may understand what you’ve told them, but they might not realize how it truly affects your life, not just physically, but emotionally too. And if they don’t realize that, how will they know what to say? How will they know what you need from them?

Degenerative diseases are a group of conditions that worsen over time because they cause your cells to deteriorate. Depending on the type of degenerative disease, different areas or organs in your body may be affected. For example, you may be familiar with osteoarthritis, which is a degenerative joint disease, or degenerative disc disease, which impacts your spine. Other conditions can affect your nervous system or cardiovascular system, like Alzheimer’s disease, Parkinson’s disease and spinal muscular atrophy.

Living with a degenerative disease can be a difficult thing to come to terms with. Many times there are treatments to help slow the progression of your condition or manage symptoms, but degenerative disease can’t be reversed. As you gradually get worse, people might not understand. They might question why you were good one day and not the next. They might say things like “get better soon,” which doesn’t apply and may feel invalidating. There are plenty of things that could just not sit right with you.

That’s why we wanted to provide a list that shows you you’re not alone in your health journey. It’s also something you can show others in your life so they know how to support you better. We asked our Mighty community what they wish people knew about living with a degenerative disease.

Here’s what our community had to say:

1. We know our limits.

“I may have extra weight, but I can’t exercise like everyone else can or it may cause my condition to worsen. So please stop telling me I need to exercise! I know my body better than you do! I know my limits and am doing the best I can!” – Kimi S.

2. It’s difficult for us to understand our bodies.

“It can be really hard to accept our own levels of disability. Sometimes our health decreases quickly and unexpectedly. If YOU find it difficult to understand, imagine how hard it is for us, the ones who inhabit these rapidly declining bodies.” – Amanda B.

“You think we’d get used to it, but each progressive loss is just as frightening and sad.” – Adri E.

3. We’re doing our best.

“[I’d want others to know] that I wish I wasn’t always tired too. That I wish I wanted to do the things I used to also. That I too wish I was the person I once was. That I grieve for these things, but all my wishing doesn’t change the facts that living constantly tired, always something hurting, is my reality now. So all I can do is the best I can. Maybe you would do different, or would deal with it all better than I am/have, but I am doing the best I can.” – Debbie B.

“Just because we’re getting worse, doesn’t mean we don’t still expect of ourselves what we used to be able to do. Be patient with us; we’re learning to be patient with ourselves.” – Leah C.

4. Looks can be deceiving.

“I’m an adult who maintains a full-time job, but that doesn’t mean I’m doing well. My job is my link to medical insurance. All my extra energy and function goes into maintaining my job. I don’t do much outside of that so that I can protect my joints. Sometimes that means I don’t eat, bathe, etc. so that I can save energy for later. I have to keep these joints of mine forever since I only have one set of them. I’m 25 and it terrifies me that my joints and connective tissue have already been the best they ever will be.” – Amelia H.

“Being told ‘you’re doing so well!’ and ‘you look so good!’ are comments that hurt. Deeply. It sucks to be reminded that I’m sick and will be getting worse. You only see my good days, not the bad. You don’t see how I have to push to get out of bed, out of the house, to not use my wheelchair, etc.” – Saylor A.

“Just because you might see me looking ‘normal and healthy’ doesn’t take away from the fact that I hurt almost all of the time and a good day may be followed by five days in bed that you don’t see.” – Erin P.

5. It affects our energy levels.

“I can’t help my moods and I’m always feeling tired. I’m not lazy. I’d love to have energy. I’d love not to be in pain. People just don’t understand.” – Misty S.

6. We’re always having to adjust.

“I wish my husband and mom understood that my spine is deteriorating and there’s not much they can do for that, so my pain continues to worsen. In addition to that, the meds that I’ve been on for years that did a decent job of controlling my pain have been cut by about 3/4, thanks to the federal guidelines. It means my ability to function has been cut, too. My mom just can’t understand why there’s nothing to help me get better and my husband can’t seem to understand why I’m only able to do less and less. As if I’m not frustrated enough with my own inability to do these things, I have to deal with their frustration as well.” – Heather L.

“Endlessly having to readjust to worsening disability. Once you are almost able to deal with it, the disability gets worse, and you have to try to adjust all over again.” – Rebecca M.

7. Some days are better than others.

“When you see me having a good day, it doesn’t mean that I am better. It’s just some days are better than others and on my OK days, I like to make the most of it by being positive and happy.” – Sarah H.

8. It’s easier to live in the moment than think about the future.

“The unpredictable nature of things from minute to minute, the new issues that pop up as a result of having a degenerative disease and knowing that yes, I’m stable now, but some day down the road the bricks will crumble and my quality of life will change yet again. I strive not to think of that day and enjoy every beautiful moment I have today. I may feel like crap, but I’m stable and for that I am beyond thankful!” – Jae M.

9. Just because we’re OK, doesn’t mean we’re cured.

“The misunderstanding between feeling stable and cured! Not cured, not any worse. Just a good enough day that I was able to make it out of the house.” – Carolyn W.

10. We want you to stick around.

“I just wish people could have some empathy and understand that we are never getting better, but sadly worse! I watch my friends get love and help when they are ill or hurt or had an operation. I too sympathize, however when you are ill every day of every year, people mostly soon get fed up and fall away. I wish people understood the struggle I have to just get up and showered and the exhaustion I feel, never mind the [constant] pain and nausea.” – Kaye L.

“It can be very isolating when friends have moved on because you can’t always participate in the fun and they get tired of asking, so they quit asking all together if you want to join in.” – Lovie S.

11. It’s difficult to be positive.

“I wish people understood how hard it is to be positive when you endure such pain on a daily basis.” — Leah M.

12. Don’t tell us to feel better soon.

“I’m not going to get better. I know they’re just trying to be positive and supportive, but telling me they look forward to seeing me more when I get better is just unrealistic and invalidating.” – Elizabeth P.

“99% of the people you encounter won’t understand the words ‘degenerative’ or ‘chronic’ and will expect you to ‘be better tomorrow.’” – Bobbette D.

“Though it is nice that you hope and/or pray that I get better, the reality is that I can’t and the goal is to maintain where I am for as long as possible. It would be easier for me if you learned to accept that as I have had to.” – Jennifer G.

If you live with a degenerative disease, share this list with someone in your life who might need a little perspective on what you’re going through. Also, remember that whatever it is you’re feeling is valid. If you are struggling, reach out to someone you trust or post a Thought or Question here on The Mighty using the hashtag #CheckInWithMe to give and get support.

To learn more about degenerative diseases, read these stories from our community:

Originally published: October 9, 2019
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