What Does it Mean to Accept Your Chronic Illness Diagnosis

acceptance01 What Does it Mean to Accept Your Chronic Illness DiagnosisLana Barhum

Acceptance is one the toughest things that anyone of us has to do. Whether we are accepting the loss of loved one, moving to new town because of a job transfer, getting divorced, or accepting that we have to live with sickness and pain, acceptance isn’t easy. With chronic illness, the sooner you accept your diagnosis, the sooner you can work on being healthy.

I know that this really does make much sense but from experience, I know that it is a process and it takes time and trial and error to learn to how to best live with chronic illness.

 

My diagnosis

When I received my rheumatoid arthritis (RA) diagnosis, I promised myself that RA would not win and I remember the feelings of fear, denial, numbness and skepticism. My emotions changed from day to day and even several times a day. Feeling hopeful or optimistic were a long ways down the road and acceptance–well, that was something I never thought would happen.

acceptance02 What Does it Mean to Accept Your Chronic Illness DiagnosisIn the beginning, I promised myself that RA wouldn’t win but all that happened was that I became depressed even though I insisted to everyone in my life that I wasn’t. The only thing that kept me going was that I knew that my children needed me to be their mother and chronic illness didn’t change that. My new RA diagnosis felt like a death sentence and the information on the internet make me feel that the disease would disable and disfigure me in five years’ time and end my life in ten years. A few months after my rheumatoid arthritis diagnosis, I was also diagnosed with fibromyalgia syndrome (FMS) and the blurry reality of what was my life started to become clearer.

I had spent ten years trying to find answers and one day I had them. What I realized at that point was that I had the power to heal because I had already started to find out how by searching for and finding answers.

As a result, I started to educate myself and arm myself with information about rheumatoid arthritis and fibromyalgia that made sense. I sought support from others who were living with the disease and I knew that if I wanted to get better, I had to accept that a handful of pills weren’t enough.

Looking beyond the physical symptoms

I also looked at my life as lesson after lesson of patience, strength and survival. Having RA and FMS were the same as any other struggle that I faced in my life and they would probably be easier than some of those struggles. When I looked at my diagnoses as just another thing that made me who I was, I learned to accept that I had no control of what happened but I had control of the response as I had when other obstacles impeded my life.

acceptance031 What Does it Mean to Accept Your Chronic Illness DiagnosisThe person that I was at that point in time was already prepared for RA and FMS and while it wasn’t easy or clear at first, I accepted RA and FMS in my life not because I wanted but because I had to.

Of course, it wasn’t easy to get to that point because living with an invisible condition (or two or three or more) isn’t that simple. And steroids, a lack of energy, physical pain, and weight gain can take a toll on you and blur your perceptive.

You lose a lot of friends and there are a lot of people who don’t understand but what the illness doesn’t control is how we respond, how we fight back and how we go on the defense against the war waging inside our bodies. The disease doesn’t get easy but we start to realize how exceptional we are to be able to overcome so much.

Why you should accept your chronic illness diagnosis

One you are diagnosed with any disease, invisible condition, and/or chronic illness, it will always be a part of your life and the sooner that you accept your diagnosis, the sooner you can learn how to live with your disease. It is also how you will cope and how you will learn to understand that your diagnosis isn’t a death sentence. The only thing that your diagnosis has to be is something you have to live with and once you accept it, you can learn how exactly you will do that.

Chronic illness is kind of like life with its all ups and downs but living with an invisible chronic disease is like life multiplied and so very complicated. It is never ending roller coaster of pain and emotions.

There is also about a lack of understanding amongst your family, your friends, your coworkers, and even complete strangers. It is about living life without knowing what tomorrow will bring and it is an emotional battle on a daily basis. Moreover, it is a bitter pill to swallow and unless you accept all these things, you will never be able to get past your diagnosis.

acceptance04 What Does it Mean to Accept Your Chronic Illness Diagnosis

How you accept chronic illness in your life

In order to accept chronic illness, take a look at the advice you have received–pace yourself, manage your condition well, educate yourself, advocate for yourself, surround yourself with emotional support and don’t let the disease define you. This advice is your guide through the roller coaster of symptoms and emotional setbacks. The only thing that can prepare you for that next flare-up is experience.

There will be days where your pain and fatigue are under control. There will be days when you feel productive and that you are in control of your life and your body again. It will not feel like a death sentence forever. On the other hand, there will be days that it will feel like the disease is in control when you are in pain, you are tired and you can’t focus or get anything done. The disease doesn’t get easier but getting through those really bad days does get easier.

Make conscious decisions

As a long time sufferer, I have learned that there can be more good days by making good choices. You have to do all the right things like eating right, taking your medications, being active on good days, and resting on bad ones. It is a learning process like anything else in your life and the setbacks–they are part of life too. You can’t control the setbacks regardless of how well you plan and a flare-up can come on at the worst possible time.

All you can do is wait to feel better and you can’t always predict how many good days you will have so try not to overwork yourself because you don’t know when your next good day will be.

acceptance05 What Does it Mean to Accept Your Chronic Illness Diagnosis

Accept that it’s not all in your control

Understand and remind yourself that a chronic illness is unpredictable. There is not much that you can do except to realize you have to adjust and adapt to the moments that the disease brings havoc to your life. While it doesn’t define you as a person, it can still define your life.

The best thing you can do for yourself is to accept that you have to be flexible to live successfully with your chronic invisible disease. The disease might be your new reality but learning to be flexible means that you accept chronic illness in your life not that you give up. Your life will never go back to “before your diagnosis,” but it can get close to it if you open your mind to what you need to do to get to that point where you can accept diagnosis in a way that means you don’t give up.

About the Author: Lana Barhum is an advocate for two online support groups, one for arthritis and the other for fibromyalgia. She was diagnosed three years ago with rheumatoid arthritis and fibromyalgia. She also works in the legal field and is a mother two very active boys. She has a blog titled: “Living Life As I See Fit” where she writes about living life with chronic illness.

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Comments

7 Responses to “What Does it Mean to Accept Your Chronic Illness Diagnosis”
  1. Beth says:

    Lana, I can relate to what you say here, although my medical issues are different. I’m intrigued with this statement, “While it doesn’t define you as a person, it can still define your life.” I’ve found it so freeing since I (more or less) got to the place where my conditions do not define who I am.

    Flexibility is such a good quality to develop when living with a chronic illness. To care for ourselves without a false sense of guilt about disappointing family, co-workers and friends is a very good thing. But this can be difficult, especially when they apply pressure or say things that don’t apply to us. We personally are the only ones who can judge when we should push on or stop and rest. With God’s help, we can be strong and consistent, despite criticism.

    Thanks Lana, for taking the time to share with us what has helped you accept and live with your limitations.

  2. Lola Handrock says:

    Thank you Lana, this is one of the few times I have taken the time to read the whole thing. Like you I have lived with chronic pain for many years and several different reasons but this started in my early 20′s and I am now in my late 50′s.
    I have always lived with pain from massive adhesion disease, celiac sprue that was not diagnosed for over 25 years, degenerative disc disease and osteo arthuritis… I worked with these and though in pain I found I could do it and had the philosphy that “The world doesn’t stop turning because I am having a bad pain day” and I would never let my pain win.
    Three years ago my back became much worse the dr’s didn’t mind much else wrong, but the pain was there so where the big knots all over my backside that because untouchable. Somewhere during that time in creaped Fibromyalgia… I like you felt it can’t win and I am not compromising. I quickly found I was unable to work. We lost our house, I became extremely depressed feeling helpless that my body had so much control over me when I have worked through it all my life. I am not a suzy homemaker, give me spreadsheets and issues to work out. I started by praying alot asking God how he could allow even more to happen to my body. Then like you I started educating myself on my diseases, I learned that an instant attack pain could flare my asthma and attack my arthuritis. I discovered that those knots of pain were not just on my backside but through-out my entire body and would beg my husband not to poke them. (it amused him that anywhere he touched me there was a knot). I also learned that fibromyalgia will interact with anything going on in your body, I have had 9 surgergies in my tummy due to massive adhesions and when fibro decides to play with my tummy they have an incredible party at my expense… Where do I draw the lines.
    You don’t, you can’t everything is to unpredictible, I learned to take baby steps, if my pain is not too bad I took pleasure in cleaning my house, not all of it, a room or the floors. I would cook a dinner and I took breaks between task. Because I have lived with pain most of my life I don’t recognize it normally until it hits a 7…I get warning signs, head chills, dizzy spells, my body is telling me it’s in distress, I will always try to push the envelope and not listen to those little signs otherwise nothing would ever get done. More than anything I have learned to put my faith in me as learning when to take it easy and to put my trust in God who will see me through all. To all of us who strugle the strugle and fight the fight, may we be an inspiration to others to know you are not alone.

  3. Susan says:

    Lana, this is a good reminder for those who have dealt with invisible illness for awhile as well as those who are newly diagnosed. As I progress with multiple chronic illnesses, I am often tempted by successes to try to do more and more. This is a good reminder to respect my limitations and manage them. Thank you so much for your posts!

  4. Cathy Brown says:

    Reading this article made me cry. I guess I have not come to terms with my hyperthyroidism (which caused me to have CHF). Since being diagnosed in 2003, I have been admitted to the hospital so many times, some of the staff call me “the techie lady” (a name that I don’t mind having, since I am mostly seen with my laptop); I have to take so many medicines, and I so..just so tired of the whole thing – that is until I read this article. After I wiped away the tears, I began to realize that I have to start to really ‘live’ with the fact that I will have to take some of the medications for the rest of my life – and that’s ok.
    All who know me are used to a tough, no nonsense Cathy, now I’m not saying that I have become a push-over but people (including my own grown children) gotta try to understand there are those days when I JUST CAN’T -
    Friends who tell me “…I don’t believe in taking medicines…I never take pills…” have to understand how hearing that makes me feel – I used to be one of those; I never even took tylenol before I was diagnosed, now I take 6 different medicines – 1 twice a day. – BUT then again, they have their opinion…I have to do what I have to do to live!

    Thank you Lana, this may have been just what I needed to hear (read) to get me out of my ‘funk’

  5. @renewcml says:

    Conscious decisions and accepting a lack of control helped this author find acceptance of her chronic illness. http://t.co/J8D1bc9u

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