For many this answer is obvious, but for those suffering from invisible physical or mental illness, the answer may be more uncertain. The simple answer is having a condition that significantly impedes your life in some way is a disability. But what exactly does that mean?
As a child my asthma was so bad I went to the hospital often and couldn’t participate in sports or other physical activity. (My mom even mistook my social awkwardness as lack of socialization due to always being sick instead of suspecting autism, and I can’t really blame her) I remember wishing I could learn Irish dancing like my sister but I wasn’t allowed because of my asthma. As I got older the severity decreased as medications improved. Now my asthma is more of an annoyance and not something I consider part of my disabilities. I also used to get migraines that prevented me from attending school. Now they bug me as they’ve become milder and more controllable. Of course now I have other severe conditions from anxiety to chronic pain to keep me squarely in the disabled column.
However for other people migraines are disabling. They can’t work, study, drive, or other basic things. They have to try stronger treatments and may need accommodations from work or school. That is classified as disabled.
Disability comes in all shapes and sizes, and especially severity. Being a disabled person and not needing one kind of accommodation doesn’t mean the one you do need doesn’t matter.
We talk about this a lot in the autistic community. Many autistics are considered “high functioning” which is not only ableist against so called “lower functioning” autisrics, it implies that some autistics are not disabled because we can hold a conversation and sometimes make eye contact.
Doctors can help confirm if you’re disabled, but don’t take it as word of god. They can be ableist, they can be wrong and not listen to you. Only you fully know how your condition is affection your daily life.
People will look at those in a wheelchair with a straight face and say the only disability is a bad attitude. If they will discount visible disabilities, of course they’ll downright deny invisible ones. Don’t let their ableism get to you. If you’re struggling in life from a medical condition, it counts and you deserve the help you need to get by.
Finding adequate pain management is difficult, especially with so many doctors becoming reluctant to help chronic pain patients thanks to the scare mongering over opioids at the moment, so in every literal sense, I feel your pain and I sympathize.
For me pain management is tricky as I react so negatively to medications, but if you do not have a pain specialist already, try and find one and see if there’s anything else they can do for you, or if there’s a med tweak that might help.
My biggest pin relief comes from weekly massage and physical therapy, without it I get acid build up in my muscles and it starts to feel like I have shards of glass under my skin. Not all insurances cover it (mine doesn’t) but it can be extremely beneficial for those of us with chronic pain. It can hurt a lot at first, particularly things like deep tissue massage, but if you start out gentle and work your way up it can really help with things like circulation and muscle spasms or breaking up painful adhesions that might be the cause of some pain. Plus it can just feel good to take a time out and stop carrying extra tension in your body all the time.
Acupressure, reflexology and basic therapeutic massage are all great ways at lowering inflammation and stress levels, and that can go a long way toward helping your pain.
Another thing I started doing this year was cognitive behavioral therapy for chronic pain management. The therapy itself doesn’t lessen the pain, but it does give me a better mentality for coping with it, which in turn helps with my stress levels and how well I’m able to manage it. People have noticed more and more recently that I’m enforcing stricter boundaries online with how far I’m willing to go in order to help or explain something, and this is a huge part of it. I’m also doing it in real life, and have cut out a lot of toxic and draining people who made demands on my time and energy that I simply don’t have to give. I’m always telling folk never to set themselves on fire to keep other people warm, and by golly gosh it’s high time I took my own advice cause if my mental health is shot to pieces, I can’t cope and I’ll just lay in bed and cry and cry and cry because everything hurts so much all the time. If I’m in a better place mentally, I’ve got more energy reserves to cope. It doesn’t make the pain any less, but it does help me not to fall into a pit of despair every time I have a flare up.
I also always try to take the time to do something nice for myself, whether it’s making sure I get my haircut every six weeks to keep down on maintenance, enjoying a nice bath or letting myself go to bed early to read a book, I make active time to treat myself with kindness and to do something out of enjoyment and not obligation. So much of my energy is rationed in terms of trying to have a functional life, it can feel like such a waste of energy to just do something that you’ll enjoy, and that’s just not true. Tonight was our anniversary and I wanted to feel fancy so I used a wine glass to drink my water with. Sounds ridiculous, but it made me feel special and normal for a split second out of a thousand moments of feeling like crap. Be kind to yourself and allow yourself small joys. They add up.
I appreciate you answering! I’ll try CBT out because I have noticed that when my mental health is bad it gets a lot harder to endure and they add on to eachother making the mental problems and the physical pain worse. I’ve been trying to figure stuff out with my doctor but he is a bit unsympathetic so I’m in the process of trying to get a new doctor. I might try acupressure as well thanks for the suggestion! I appreciate it a lot, I’ve been dealing with various issues for a while and reading your blog posts about getting better and healing helps give me hope.
You are so very welcome. When I first started blogging I could hardly ever find anyone who was dealing with my types of issues, and that feeling of isolation alone was unbearable. I never wanted anyone to feel like that, so I’m glad to know that me talking about these things helps. It makes living in the public eye somewhat more bearable lol.
If you wind up struggling with CBT or find it doesn’t help, another thing I’ve been using to great effect is EMDR. It was initially supposed to just be helping with my PTSD but we’ve actually found through trial and error that it’s very good with helping to deal with the stress of always being in pain, so that’s another option.
Good luck, and I wish you great progress on achieving a better quality of life💖
A friendly reminder for those of us who do very little during the day (by “normal” standards) but are still exhausted
Your body is literally fighting the pain. Fighting takes energy
I know this, but it is still bloody inconvenient to come home intending to Do Stuff, and instead here I am two hours later waking up groggy on the bed with the cat
I’ve been calling it “Pain Drain.” I’m sad that so many people know how about “pain drain” because they also experience it. 💙💙💙
I say we spread the news, because some people think when we limit activity because we’re in pain, that it’s some kind of vacation. We hate it. It’s no frickin’ picnic.
Since I’m almost always in pain it’s so weird when OTC painkillers actually work and I’m having a good day and nothing in my body hurts and it actually almost sort of freaks me out bc the only was I can describe it is “weightlessness.” I didn’t realize pain makes me feel “heavy” until I started having no pain days, and I really feel like I’m floating, even a little light-headed like I could be tipsy. It’s wild. when the pain subsides quickly, I feel almost like I’ll all asleep and I’m like “what’s wrong with me…oh I don’t hurt.” It’s strange!!!
It feelt like what I imagine being high would feel like
I feel like any demon that tried to take over this vessel would last about thirty seconds then make a swift exit like the olive garden meme, hastily gathering their non corporeal form together like “I’m sorry, I have to go, immediately. This was fun, don’t call though, I’ll call you”
This is actually something I get asked a lot, usually by people who don’t yet realize that yes, the back pain they’ve had since their teens is a chronic condition (and just because a condition can go into remission for a while doesn’t mean it isn’t there anymore), and yes, they belong in the spoonie community if they want to. Even those of us just passing through on the road to recovery are welcome here, at least by my book.
Chronic pain is chronic pain, regardless of whether it was caused by illness or injury. There’s a great deal of overlap between the disabled community and the chronic illness community, and we should be inclusive and supportive of each other. There’s too many people needing help and looking for people who understand what they’re going through to turn round and say “you’re not sick enough to sit with is” because where and how do you set that line? Asthma is a chronic illness, and hardly ever gets the recognition of one. Simply because something is common does not negate the seriousness of it.
So, in short, yes. It’s okay. And I hope you’re having a day with less pain. Sometimes that’s all we can ask for.
