You're Allowed to Have Bad Illness Days – and Bad Illness Years

People often wonder how someone can actually live with a chronic illness and still remain active, positive, and overall happy. The truth is it is extremely difficult, and sometimes it is just a show.

I was diagnosed with juvenile arthritis when I was 18 months old. Overtime, I’ve come to grips with the fact that you not only have good and bad days, but good and bad years.

In no way, shape, or form is it a negative thing to be open about your illness. This is something I have personally struggled with for years. Struggling in silence was a way of life for me because the fact of the matter is, opening up to people and trying to get them to understand this invisible pain that you have hidden deep inside of you, isn’t easy.

At some point in the process of growing up with an illness, you learn that you are your number one advocate. Until we refuse to stop living in silence, there will be no action. Yes, some may find my Instagram posts a little excessive, but that is how I have learned to cope and talk about my pain –  and some people will never understand that, but that’s their problem, not mine.

I have always been the type of person that relies on music or quotes to try to put feelings into words because I have never been able to fully explain it myself. Artists like Taylor Swift, Hasley, and Kacey Musgraves have a gift that a lot of artists do not, and they certainly get me through the good and bad days. People often tell me they saw my Instagram post and they are sorry I am not feeling well, and hope I feel better. I also have heard that my posts are depressing and I should be more positive.

I am not posting my pain for pity, I am posting it so that I feel better. I am posting so that other people who are in pain know they are not the only ones and I will never apologize for that. If posting a quote my Instagram story makes one person feel like they aren’t alone, I will do it every day. Regardless of the reason for the post, it helps me.

I have been asked time and time again, “How do you do it?” The truth is, I have no other choice. I often get told to “slow down” or asked, “have you tried this diet?” First off, I have never been the type of person to “slow down,” so if you are saying that to me, then you truly don’t understand or know me at all. I may be in pain 24/7, but I refuse to miss out on life because of this disease. Unless you are a rheumatologist, please do not recommend a diet or losing weight. What most people don’t understand is this isn’t your grandma and grandpa’s arthritis, while we truly appreciate you caring about us and giving suggestions, telling us to try this new diet is an insult.

No one wants to hear that you aren’t getting better, but unfortunately, that is the truth in a lot of our cases. I have tried almost ever biologic product that has been approved for rheumatoid arthritis (RA). The only drug that seems to help me is Prednisone, and after being on and off the drug for five years, I decided to stop due to weight gain that hit me like a ton of bricks.

The last three years have been extremely hard for me. Instead of trying to be honest with myself, I tried to hide how much pain I was in – but I can’t do it anymore, I have to be honest with myself and everyone around me. The hardest thing I have found for people to understand is not only do I have arthritis, but my immune system is compromised tremendously. So much so that I have had over 40 doctor visits in the last 12 months and have had pneumonia a hand full of times. While to everyone else my RA and getting sick may seem like two separate problems, they are not. A healthy person getting the flu or pneumonia may be just a quick stop to the doctor, but for me it could result in being in the hospital for multiple days if not treated correctly. So when I say I am going to the doctor, I am actually going to be at the doctor 100 percent of the time, and most of the time I am there for hours.

I am not promising you that everyone will understand your pain, nor do I deny to the fact that even sometimes our own doctor’s don’t understand our pain, but what I am promising you is that you deserve to feel heard and understood. You do not deserve to feel broken – and I don’t care who it is, your doctor, boss, significant other, friends, or family – you should never feel like a burden. This illness is not your fault and you are allowed to have bad days, and if you’re like me, you are allowed to have bad years.

Getty Image by DKart