This is my story of what it’s like being told you have a Chronic Illness. This post has taken me weeks to write and I wasn’t even sure if I was going to post it. But hey, what do I have to lose?
It would be nice to hear “Feel better soon” or “Get Well Soon” and for those words to actually mean something. I have an illness that I’m never going to get better from. There is no cure, it will be with me forever and the sad thing is that it’s only going to get worse.
The physical pain is hard. Every single day I’m in pain, I struggle some days with basic tasks like climbing the stairs or just lifting my arms. Mentally this illness is devastating. For me I feel like I’m a burden, I constantly feel guilty. Therefore most of the time I keep my feelings to myself, why would I want to share them?
It’s so impossibly hard to fight how you feel emotionally. Normally if you’re sick you get your diagnosis, have treatment/medication and get better. When you have a Chronic Illness you don’t have that. For me being diagnosed was tough and finding out that treatment wouldn’t necessarily make me feel a lot better was horrible. I have been through so many tests. I’ve been stabbed with needles more times than I can count, at times it’s bloody hard to deal with.
With a Chronic Illness, no two people are the same. Symptoms vary which can make a diagnosis very difficult. With a Chronic Illness, everyday is different. You can’t plan anything. For me, this has been the hardest part. I can’t plan to go out for meals because I don’t know how I’m going to feel on the day. It’s tough not to get down about this. Normal people can enjoy life and plan to do things. Currently, I can’t.
Since telling people I have a Chronic Illness I get a lot of “How are you feeling today?” normally I just lie and say “I’m ok”. I don’t share how I’m really feeling because people don’t understand and that’s ok. I don’t expect people to understand. A lot of people think after I take I’m medication I’m fine. That isn’t the case. I take my medication but I’m still sick and I’m still in pain, explaining this to people is difficult. They don’t understand why I take medicine if it doesn’t make me feel 100% better.
Yes, I get ok days where I feel human but the majority of the time I feel awful. I have been diagnosed with an autoimmune disease. My body is fighting itself every single day. I have numerous symptoms. A lot of them decide they want to join me all at once. (YAY – symptom party). Other days I’ll deal with a couple – these are my good days.
I’m drained. I feel like my body has failed me. A lot of the time I put on a brave face. Inside though I’m falling apart. I’m constantly exhausted. I feel like I’m not good enough. I feel like I’m a nightmare to be around. I feel like everyone is walking on eggshells around me. Some days I feel embarrassed because of my illness. But why? It isn’t my fault.
I’m hoping that one day there will be a cure. That I won’t have to fight every day to feel ok. That I will be able to live every day without medication and just be normal.
Since I’ve been diagnosed I try to be positive. There are people out there who are going through a lot worse than I am. Some days I do feel sorry for myself and just want to curl up in a ball and cry. The majority of days I get up, put my makeup on and go to work.
This is my life now. I cannot do anything about it. All I can do is live with it. When I get a good day and I’m able to have fun with James and actually get out I treasure these days so much. They mean the world to me and that is a blessing. I’ve learnt to appreciate the simple things in life a lot more. Before I just took them for granted. I’m looking after myself a lot more and in ways I’m learning to be selfish. I’m doing things for me.
I’m a stronger person now and I can deal with this. I’m going to hit some bumps along the way. But I’m going to be ok, I have to be.
If you know someone with a Chronic Illness. Ask some questions. We don’t mind. From my point of view the more you talk about it the more awareness is raised.