When I got diagnosed with Rheumatoid artritis I barely knew anything about it. I thought it was a typical disease for elderly people and there’s no way I’d have RA. We’re 4 years down since my diagnosis and there are a few things I wish I knew before I got diagnosed. In this post I’ll be telling you what things I wish I knew. Are you diagnosed with a chronic illness recently or do you think you might have one? Here’s some stuff you might want to know:
The first medication you’ll try, might not work
This was a huge disappointment to me. I started with normal NSAIDs and Salazopyrin not only it didn’t work but I also turned out to be allergic to them. I thought, since I’m young, dealing with RA and finding the right meds would be a walk in the park. We’re about 4 years later now and we’re still searching for the right medications.
It’s okay to mourn your old self
You won’t be able to do as much as you used to and you might have to give up on things. I had to stop horseback riding while I was on my way to do some big competitions and the goal were the Olympics. Having a chronic illness asks a lot of your body, it’s basically fighting 24/7. Pain and severe fatigue are a daily struggle so it’s absolutely normal and you have the right to be sad about it. Take your time to cope.
Every patient is different
What works for someone else might not work for you and that’s okay. Don’t compare yourself to others and don’t let others tell you “But it worked for me so it should for you as well!” No. A chronic illness is never the same for anyone. So don’t get upset when something doesn’t work for you while it did for another and don’t feel guilty! Some people with a chronic illness can still work, others can but reduced and others can’t at all. Please don’t feel less of a person if you cannot work or have to do reduced work. Don’t push yourself and stop comparing yourself to others.
Some stuff you eat might cause a flare up
I personally don’t have that problem but I heard many other do (again, not every patient is the same). Many doctors forget to tell you this but some patients get flare ups from eating tomatoes, red meat, eggs or even dairy. It’s easy to find the whole list online, I’m not including a site as there are different sites saying different things. Best thing to do is keep a food journal and write down what you eat, do you get a flare up shortly after eating something specific for a couple of times? You might want to avoid that one in the future.
Friends will leave
This was a big slap in my face. I used to have a lot of friends who I would go out with once every weekend while I was in college. But as soon as I started to struggle more and more (not being able to walk as fast as them, not being able to stand up all night, severe fatigue) slowly but surely they started going out without me and I heard them less and less. They all still see each other so I know it’s because of my RA. Unfortunately it’s something you have to accept, people will leave. But, as hard as it is, it’s better to surround yourself with people who will support you through your journey
Dating will get more difficult
It’s a case of knowing when to tell them. Personally I always told them right away as I didn’t want to put energy in them if they wouldn’t accept the whole of me. I have to say that I heard a lot of excuses once I told some guys. From “Oh I cannot handle that, it’s too much for me” to the ones who just completely disappear. But once you find the right guy, the one who accepts you and supports you no matter what, it’s totally worth all the rejections.
Your mental health will be affected
Mental health is something who’s often forgotten. It’s really important to take care of your mental health, this comes first. Do you want a break between finding the right medication? That’s your right. Don’t you want to see any doctor for a while? That’s your right. Are you in too much pain and do you want to stay in bed all day to binge watch your favourite serie? Please do, it’s your right. It’s something I neglected for a long time and sometimes still do but when your body is fighting 24/7 it’s important to make sure your mental health doesn’t go downhill.
You have the right to talk about it
Talk. Talk. Talk. It doesn’t matter if you told your mum 5 times already that you’re hurting. It doesn’t matter if you want to complain about your disease to a friend. You have to talk. You have to communicate. They don’t know how you feel, they don’t know what it is like to live with a chronic illness. If they get mad at you for talking about it then they’re in the wrong. I made the mistake to not tell my mum what my needs are which ended up affecting her mental health. Don’t make the same mistake I did.
You might need mobility aids
And that’s totally fine. I started with a crutch then with a walking stick and now I also use a wheelchair. I used to avoid showers as it was so painful for me to stand up so long. Long live shower chairs, they’re one of the best things ever invented. Believe me when I say one day able-bodied people will realize how great they’re and everyone will start using them. I know it’s a big step to start using mobility aids but once you’ve taken that step you’ll never regret it. It’ll give you so much more freedom and it might help with the pain.
Self care is more important than ever
Pamper yourself for tiny achievements. Went to the doctor? great, pamper yourself. Went to work? Pamper time! Got out of bed? Time for a face mask! It’s something I don’t do enough so I’m telling you to do so. If you care for yourself, you’ll see that your mental health might improve as well. Your body is fighting 24/7 you deserve more than anyone to do some self care!