A letter to all the Rheumatoid Arthritis "Newbies"
A letter to all the Rheumatoid Arthritis “Newbies”
I recently received an email in regards to someone who was doing research on rheumatoid arthritis. They asked me what I would want to know from my doctors regarding the disease, medications, and side effects. I thought about this for awhile and years of memories, that I am sure I have chosen to forget, flooded my mind. I began to remember the loneliness I felt and the way I felt like no one in this whole world could ever possibly know what I was going through. I began to remember the uncertainty I felt toward my future and how I felt like everything I had planned for and everything I had worked so hard for was lost in that instant I received my diagnosis.
My heart ached as I remembered exactly what it was like to be a newly diagnosed rheumatoid arthritis sufferer, or a “newbie”. So with all those emotions running through my mind I have decided to write a special letter for all the newly diagnosed sufferers out there, for I too have felt the same way.
Dear newly diagnosed fellow rheumatoid arthritis sufferer,
I know that the many emotions and all the unanswered questions running through your mind right now may be overwhelming. You may feel like you are all alone, left with an incurable disease to bear for the rest of your life. You may be wondering what you have done in your life that was so awful that you deserved the daily pain of this crippling, debilitating disease. I know, because I too was suffering with these emotions and unanswered questions. Please know you are not alone, you are never alone
If you are newly diagnosed there may be some things that your doctor has not prepared you for. You may begin, if you haven’t already, to experience a period of depression. Please know that this is very normal. There is no need to punish yourself for these feelings for most of us have been through this, and there is never any right or wrong way to feel in regards to this life changing diagnosis.
For some of you this diagnosis may, at first, be a relief to your long struggle with trying to receive a diagnosis. Many of us have felt that relief before as well, after spending so much time trying to convince the doctors that there was, in fact, something wrong with us.
The depression itself may be overwhelming. There may be days, weeks, or months where you want to just lie in bed with the covers pulled over your head and wish that everything was all right, that you weren’t sick. When you start your new medications and your treatment plan, please know that you may not find relief from the medications right away, as some take 4-6 months to take effect. It is normal to find frustration in this and to wonder that if the doctors were faced with this same disease, could they handle waiting 4-6 months for some type of relief. There will be days when you wonder how you can ever make it another day with this pain. There will always be days when you ask yourself this. You will make it through this. We have all felt this same way with the depression, the uncertainty, the unanswered questions, and the loneliness, but I am writing this to reassure you that life does not end here.
It gets easier
While I can tell you that life gets better, and living with this disease gets easier, I cannot tell you when or where that will happen for you. So instead, I will provide you with hope. I call you my fellow rheumatoid arthritis sufferer, but what I prefer to call you is my fellow rheumatoid arthritis fighter. That is what will bring you hope. Fighting this disease will bring you hope. You may wonder how it is possible to fight an incurable disease. I too have asked myself this same question after being bombarded by family who told me that I had to fight this disease.
This, my fellow fighter, is how you fight rheumatoid arthritis. You start by getting out of bed. That may sound very simple to a healthy person, by with rheumatoid arthritis, this is never a simple task. You may not be able to get out of bed due to the depression. You may not be able to get out of bed due to the pain. Or you may not be able to get out of bed due to the fact that you were up all night because of the throbbing or maybe because of the side effects of your medications. But to fight this disease, you first must get out of bed. Please know that there will be some days when you can’t get out of bed. The pain may be too unbearable, or you may just need a day with the covers pulled over your head. That doesn’t mean that you are not fighting rheumatoid arthritis, it just means that you need a day, or two, or three to rest in order to have the strength to fight again.
The hardest step
Now the next step in your fight against rheumatoid arthritis is the hardest one, and it is also one that you have to figure out on your own. The next step to fighting rheumatoid arthritis is to live. It’s as simple, yet extremely difficult, as that. The hardest part of this step is that you must find your own reason to live your life, and live it well. If you aren’t at the point where you can do it for you, then do it for the ones around you who love you. Do it for the ones who have brought food to your bedside on one of the days you were just too depressed to get out of bed. Live for your spouse or your kids who may have seen you give up so much, that they feel they may have lost you forever. Then, you can do it for yourself.
Severe rapidly progressing Rheumatoid Arthritis
You may ask how I dare tell you how to live your life or what to expect. I only tell you these things out of my past experience. I have had rheumatoid arthritis since high school. I didn’t experience severe pain until I was 23 after the birth of my second son.
After that I spend two years of my life on a mission to get a diagnosis, even after my physician told me that I had absolutely no medical reason to have any symptoms. At the time of my diagnosis I was told I had so much damage in the joints of my fingers that I would not be able to pursue a career as a court reporter and I was only three months short of getting my bachelors degree. I have lost out on a full year of my kids’ lives as I lay in bed. My husband has had to feed me, dress me, and he has seen me spend hours screaming in pain until my voice no longer sounded human. I am now 29 years old and have what many rheumatologists have called severe rapidly progressing rheumatoid arthritis, and I am living well and fighting this disease.
You are not alone!
I have chosen to write this letter to you, as well as share a little of my life with you to let you know that you are not alone. I want you to know that I too have experienced depression, and I still have unanswered questions. I have felt the hopelessness and the uncertainty of my future. I have wondered what I have done to deserve this disease, and I have wondered how I could possibly live one more day with the pain.
But I have chosen to be a fighter. It is not a decision that came easily to me, or one that I made right away. I wake up each morning and I know that if I can just get out of bed, then that is one ugly slap in the face of rheumatoid arthritis. Yes, I lost all the plans I had made for my future, so I made new ones. No, I can’t do all the things I could in the past, but I feel deeply, laugh louder than anyone, and am constantly forcing myself to get out of bed. It’s not easy, but it does get easier. It’s not always fun, but it is worth it.
Rheumatoid arthritis can only take from you the things you let it. Only you can decide when enough is enough. We are all here for you. All of us fellow rheumatoid arthritis fighters have felt the same way. Maybe we can be the ones answer some of your unanswered questions. Maybe we can provide you with hope. I am a strong rheumatoid arthritis fighter, but together we are stronger and we will make it. You never have to fight this disease alone. If there are days you feel like you just aren’t strong enough to fight, give us a chance to help or to fight for you. Living with rheumatoid arthritis is a battle, but not one I am prepared to lose…are you?
Holly wrote for HealthCentral as a patient expert for Rheumatoid Arthritis.