Feeling Like Dr. Jekyll & Mr. Hyde With Chronic Illness

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Personality changes are common among people with chronic illness. Because of chronic pain, extreme fatigue and exhaustion and just the severity of the illnesses can take a real toll on patients mentally along with physically.

I personally feel like Dr. Jekyll & Mr. Hyde and I’m sure that many people over the years have wondered who the real Sandy is because of this. I have always basically been an upbeat, happy person who smiles big and loves life and gets really excited about new adventures. But when I am having a bad day or a severe flare, I need to be left alone. I don’t want to talk to anyone, I don’t want anyone around me, and I am not very friendly. Every little thing annoys me and I become a recluse. Going back to work a few hours a week has helped this somewhat because it forces me to get out but it can be very difficult working with the public when I am having a CFS, Fibromyalgia and/or IC Disease flare.

I have always felt like I needed to hide how bad I really feel and, as long as I am not feeling extremely bad, I can usually put on a smile, turn on the charm and do what I need to do while I’m in public.   Once I get in my car or get home, I burn out and there’s nothing left.  I try to put on a happy face at home, especially for my son, but there are times when that’s not even possible.  I can say just one word to my son and he will know I’m not well.  He will say, “I can tell you’re sick, Mommy.  Your voice sounds funny”. 

Back when I first became sick, I learned how to force feeling well and acting well because I believed that if I pretended that I was healthy, I would become healthy.  Now after being sick 20 years, I know that thinking myself well is only making me more exhausted and sicker some days because it takes a lot of energy to try and be  like the person I am when I feel well.  I can’t seem to stop doing it, however.  I think it’s because when I am having a really bad day and it’s noticeable to others, I don’t like the attention.  I don’t like hearing that I look bad, tired, sick, exhausted and all of the other comments that I get.

Even around my family (parents, in-laws, etc.) I will try to hide how I feel a lot of the time when I am around them.  I will turn on the smiling face, try to crack a few jokes while the whole time I just want to be in bed because my body is screaming for me to go there.  When I know that I am too bad off to be able to fake it, I just stay away.  I know it’s hard for them to understand and none of them possibly can because they don’t live in my body.

I guess another reason I feel like I have to be something I’m not physically feeling up to being is because it’s really hard for me to let people in – even those closest to me.  It’s something I really struggle with and have struggled with ever since I became ill. 

Personality changes because of chronic illness affect our daily lives and relationships with family and friends.  How have you learned how to cope with your Dr. Jekyll and Mr. Hyde times?  Let me know in the comments!

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Comments

  1. This rings lots of bells for me.

    I’ve been ill for nearly 10 years, but part of the way I learnt to deal with was to not express how bad I felt, or how hopeless I thought it was sometimes. And although I *do* feel like that sometimes, I think not fully expressing it allows me to burn through it in a way and keep on functioning. Or maybe that’s just me justifying my own dysfunction 🙂

    That said, I do think that you need to be able to think yourself healthy to be the most well you can be. Certainly my mental state effects my physical state, and when I’m not feeling good in my mind I’m not feeling physically good. Not letting my head fester in that state contributes to the level of my health, I’m sure.

    But, the closest people to me can always tell when I’m ill or tired from my voice, and that is something I can’t control. Which I’m oddly thankful for, because I know if I had the option the control freak in me would hide every last symptom.

  2. Dear Sandy,

    I am sorry for what you go through daily.
    I feel your pain. If I didn’t know better, I
    would think that I wrote those words.
    I am at aLways at a loss for words when
    it comes to describing how I feel– you did
    it perfectly!

    What is hard for me is that my mother has
    been sick since 2002 so even when I feel
    bad I still have to go help her daily. I always
    try to be pleasant, but sometimes it is so hard.

    I wish you all the best, and a complete
    recovery.

  3. I have been ill for 3 yrs. now. (FMS/CFS, severe hearing loss & balance disorder all springboarded from a virus). I’m a mom to 3 young children, in my very early 30’s and it’s hard. I’m helped by remembering songs that uplifted me at some point & watching tv shows that I love. It also helps me to eliminate or limit my exposure to cynical people, read inspiration quotes, write, pray & meditate.

    And yes, my husband and kids can spot a flare up a mile away. I tend to go inward. On not so good days, I hope no one asks “How are you feeling?” I honestly feel that that phrase is mainly used as a convo starter. And that they truly are not ready to know “how I feel”. So on those bad days, my response to that question is “I’m here”, and greatful for it. Hang in there guy’s 🙂

    (FMS/CFS suffer 3 yrs., kids of a suffers for over 20 yrs.)

  4. Hello, my name is Lori. January is Thyroid Disease Awareness Month and I wanted to bring this to your attention as a reminder that thyroid disease often manifests with fibromyalgia type symptoms and that it is important to be tested for thyroid disease. May doctors do not test adequately for thyroid diseae and that’s why it is important to educate yourself. I was diagnosed with fibromyalgia and chronic fatigue/narcolepsy. Several years later I was finally diagnosed with thyroid disease and many of my severe fibro-like symptoms have improved. My thyroid disease is not optimally treated yet so I am hoping those symptoms will improve further. I was amazed to see how many symptoms of both diseaes are the same including muscle and joint pain, word finding difficulities, depression, brain-fog, etc. I would also like to leave this link for information.

    http://bit.ly/4t0XjK

    Thank you,
    lori

  5. Why do we women always feel we have to hide our pain. Because we have husbands, children, jobs. If there were no women in the world, it would collapse.

    Men (most men, not all, I have a fantastic one, at last) do not attempt to understand and expect us to just continue on as if we were just fine. They get a cold and call in the Red Cross~~~

    Ann

  6. I completely feel like I could have written these exact words that you have shared. I have been dealing with chronic daily headaches for just over 6 years and am now realizing that “faking it” doesn’t help anyone. I tried to just convince myself that if I told myself I felt fine, I could really pretend and take that on. It’s caught up to me and I haven’t been taking care of myself appropriately because of it. I totally agree with the Jekyll/Hyde comparison, because my emotions/actions/etc run the gamut now.
    I’m struggling to get through this workday and keep my head together enough to get my job done (teaching assistant with special education students)… it’s difficult today with my pain level(s).

  7. Like others have said, reading this was like I could have written it myself.
    For me, it’s been 10 years, ever since I had lupron shots for endo. I had a hysterectomy shortly afterwards, but it didn’t help. Started with kidney stones every month, then fibro, thyroid problems that I still don’t know what they all are yet, other than a goiter, because most of the time I’m too sick to go to all the DRs appts I need to go to. I’m sure there’s more that I can’t think of right now.
    I also have IC, recently diagnosed, and I think vulvodynia and pelvic floor disorder too. Other than the endo, I was healthy prior to the lupron shots, and I think that the shots just did something to my body, it seems to be fighting against itself. Add to that the tiredness and not being able to sleep, as well as fighting with the disability company on a monthly basis as they try to kick me off of their plan, and I don’t know how much longer I can hang on. It takes so much energy to fake being okay, and I hate lying to people when they ask me how I’m doing by saying I’m alright when I’m obviously not. Like you, it comes through in my voice and my family knows when I just can’t take it anymore, my door shuts and my life revolves around the heating pad and ice packs in the darkness.
    It’s reading blogs like this, and my family that keep me going. I hate seeing others going through this, but knowing I’m not alone and I’m not crazy goes a long way.
    Thank you for writing, it really helps many.
    Lynn

    • Thanks, Lynn. Sometimes I feel like I’m not helping anyone, that I’m just complaining. It’s nice to know that people appreciate my feelings put into words. Take care and happy health to you!

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