27th of June 2016
It’s been one year today since my first appointment with a rheumatologist. I’ve been fighting RA for over a year but it’s been exactly one for my *almost* diagnosis.
I can’t stop my tears from falling as I write this but I have to. I have to document days like these as a reminder of my strength, to help me get up in the morning when my joints are replaced with old rusty door hinges, when I whisper to myself *we can do this*. I need documentations to remind myself that I’m a fighter, I’m the bravest version of myself and I’ve made it through.
I can clearly remember everything about that day, the day I received my tests results and how few digits from the lab have changed my entire life and redecorated my dreams.
My doctor promised me remission within three months from that appointment, six months max.. it’s been a year now and the time span for a sustained remission elevated to 1 to 2 years and until today, I have this tiny voice inside of me that keeps yelling right before every appointment telling me that this is not real, this is not happening, you’re not sick and when you see the rheumatologist now he’ll have the best news and we’ll walk freely out of here forever.
I’m not going into details , maybe in the near future but for now I’ll list the highlights I have learnt so far,
- It takes forever
Please be patient. Don’t expect to wake up all cured in one day and don’t expect that you can fight your demons in one night.It can take forever to understand your illness, the medical face of it or at least to pronounce and spell it correctly and it will take even longer to cope with the emotional war you found yourself in with no prior warning. Don’t rush yourself to be okay, healing is a process and you have to take your time living each stage through until you reach the end of that tunnel.
2. Give others a break
It took you so long to memorize the name of whatever chronic disease you’re diagnosed with, don’t expect others to know all about it from a 30 minutes search on WebMD !
I know how much it hurts to be alone in this but give your family and friends a break when they don’t seem to understand why you keep canceling on every plan you made together.
Don’t get upset when they freak out if they see you during a flare not knowing what to do to help or ease your pain.
It’s a huge burden and you’re already carrying the weight of the world on your shoulders *on your knees and ankles and most probably your back too* just add the task of educating others about your illness to that weight and it will feel lighter soon. Provide them with articles, blogs or you can even ask them to join your next appointment for them to truly understand and start giving you the break.
3. Not everyone deserves a break
With time you’ll come to discover who’s truly willing to understand your condition and be there for you through thick and thin and who’s not ready to stand by your side.
Expect to lose friends through this journey. With every birthday party they had to leave early because you felt like dying, with every breakfast your turn to a brunch because you were too sore that morning, with every canceled plan you will lose a friend. You’ll notice how your friends stop asking you out so often, you’ll feel left out and abandoned but very few will stick around and those are the ones who are worthy of your spoons.
Don’t exhaust yourself to satisfy someone who isn’t ready to accept you at your worst or will give you a bad time for being the sick friend always ruining their fun.
4. Cry your eyes out
Cry, wallow, be sad, scream to the void and grieve the life you’ve had and the life you’re most likely never having. Don’t be hard on yourself pretending that you’re not in pain 24/7. Don’t hide your discomfort and don’t be afraid of saying that you’re not feeling well out loud. It’s not your fault your body is at war with itself and it’s nobody’s business to call you out for crying when it’s literally all you can do.
But when you’re done; pick yourself up and go on with the life you’re living now. There’s still so much more waiting for you out there you just haven’t started yet.
And remember, if you can’t let go of the old you. Your wounds won’t heal if you’re still in denial.
5. “Listen to your body’s whispers before they turn to screams”
When you’re aching and your pain is a 6/10 don’t pretend as if it’s all rainbows and lollipops and go out trying to take over the world and turn that 6 to a 60/10 !
Know your limits and never cross them, don’t beat yourself up to be normal when you’re very aware of how different your body is than everyone else’s.
6. Take care of yourself
Please! Take care of yourself, never skip your meds or mess up with their schedules, don’t skip your doctor appointments and monthly tests. Don’t exhaust yourself by too much work and lack of sleep, and don’t hurt your body by sleeping too much or lack of trying and being afraid of working out or just doing small things around the house to get yourself moving.
7. Never stop learning about your illness
Surf the internet thousands of times a day, go to the library, make a list of endless questions and ask your doctor about everything. The moment you understand what your condition is and the more you know about it the easier it gets to fight back and it’s less horrifying to deal with it when you know all the ins and outs of your illness.
8. There’s nothing embarrassing about it
I admit that until today I find it hard and embarrassing to discuss due to the society I live in. It’s embarrassing to be unhealthy let alone be 23 and diagnosed with a chronic illness? As if being sick was your choice and it was a very fucked up decision to make.
The second harsh part about it is the looks of sympathy you get from someone when you tell them you’re ill and how the entire conversation becomes awkward and uncomfortable because they just want to get it over with as if your misfortune is contagious and they don’t want anything to do with that part of your life. They never look at you the same again.
9. Your pain is real
It’s not all in your head. What you’re feeling is there and it’s real.
Your 10/10 on the pain scale can feel like a 2/10 for someone else but that doesn’t make it less painful to you or to them. We all function at different frequencies. Do not underestimate your feelings to compete in “Who’s hurting more” game.
10. It will get better, I promise.