Being chronically Ill is something I don’t talk about much anymore, for many reasons.
Some of those reasons is that this subject tends to be the only one that people know how to talk to me about, I want people to see me other than “the sick girl”. It is shocking but I do have thoughts and opinions on many other things. I have also decided that being ill doesn’t define my personality.
On the other hand, my mind is managing my symptoms and working extra hard to ignore this part of me (which does take up a lot of thoughts and mental energy) that I just can’t take the idea of talking about it anymore… at the same time there are moments where I need someone that truly understands and to talk to about it.
I need to know that that one person I talk to about it, isn’t burdened any further by all the issues and pain and symptoms I have going on because I already feel like a burden.
BUT I WRITE THIS – because I believe it’s helpful to those that are struggling:
In the period of time where you are still trying to figure out what chronic illness you have that you will want to give up. You are guaranteed to have at least one doctor tell you it’s all in your head to make up for the fact that they don’t know how to investigate your symptoms properly. I want to say sorry for that. It has only been after a lifetime of health issues that I can look back and say that those doctors get away with it because they have education certificates that tell people they are qualified, but they are obviously lacking in what they should know. They should know that you either need help from a different specialist or the tests they should be running to discover the truth. It’s not you, it’s them. I can tell you a list of the insanely stupid things that doctors have said to me because THEY were incompetent, but ultimately – if they can’t work out the puzzle of your symptoms – it’s somehow your fault. Wrong. I’m sorry if you have experienced this – please don’t let it stop you from going to doctors – there are truly some great ones out there. Don’t let the ones who have to big of an ego to admit that they don’t know something affect you (easier said than done I know).
There are times you will wonder what you contribute to others, why you are here when you are in pain and feel like you have nothing to give. You do. Even if it’s just empathy for others, or writing a card to someone who’s ill, or sending a caring text. You have a gift, even if it’s hard for you to see at the moment because you are overwhelmed with pain, discomfort, and exhaustion.
I want to express encouragement for you to keep going. Whether you know what is wrong or not, my doctors are always telling me of a new technologies everyday that can help people who could not be helped before. I have had challenges with my health since I can remember, with so many different health systems. I really could fill up my Facebook friends with my specialists (I see them more often than my actual friends). I have to constantly see them, and have check ups and have them keep an eye on things until my next surgery. There was a period of time though where I was told I didn’t fit in “any category” of illness. Some doctors (the bad ones) told me it was in my head. Some doctors (the good ones) knew it was “something” but an awesome doctor will admit it is beyond them. The good doctors would say “I feel like you have something, that will be discovered soon, and we can all figure out what this is. I didn’t realize that at that exact moment was when my illness was being discovered – but had yet to be widely recognized or published until 3 years later.
I have things that did not show up on one type of scan but showed up on another…. There have been mistakes but ultimately there have been wins. I have an amazing support team of doctors. I have had such rare conditions that I know I’ve been written up somewhere in some medical journal. So I’ve had my fair share of doctors who shrugged their shoulders. This is discouraging but I will say I would much rather a doctor say “I believe you but I don’t know what it is” than a doctor who would like to pretend I’m imagining symptoms (even with abnormal test results).
I also look back and realized I tried some kooky things all because I had hope that I could get fixed and I had no answers. I get frustrated with people who offer crazy things, they are scam artists at best, and they feed on people who are desperate for help. Someday you may shake your head or laugh at how silly it all was.
I am sorry for all the ‘friends’ in your life who don’t understand and make stupid and judgmental comments. These people will either no longer be in your life or you will learn to ignore them. I have found that the majority will finally understand (after going through their own health trial) how much they were ignorant about. That’s when you can turn around and be the friend to them that they never were to you. It happens…
Hang in there. You are not alone. There is much I don’t like about social media but a beautiful thing about it is that there is easier access to support groups for people who can’t get out of bed that day (that week, month or year). There are many blogs I have found on chronic illness… (if you are reading this and you blog about having a chronic illness, please place a link in the comments section) that I find to be comforting on those difficult days.
My life is better in the sense that I now have more good days than bad (that’s how I measure it), and hence why I don’t discuss it as much but I know quite a few people going through their own health struggles lately so I felt like it was time for me to write this and just say sorry. It isn’t fair, I know that if you were well you would be seizing the day and doing amazing things. Sometimes the endurance you have to keep going is what inspires others – and if you don’t even feel strong enough to put on a brave face, and all you can do is feel miserable, I hope you have some company to feel miserable with, a person or a pet, or just to vent in a chronic illness group.