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The Harsh Realities of Chronic Illness

 I wasn’t sure if I should write this post, but I feel like I owe it to the MANY who live silently with their chronic illnesses.  “Normal”, healthy people aren’t very interested in this stuff, but PLEASE just take a few minutes to read this so that you have a greater awareness of the THOUSANDS who battle a chronic illness that you may not see on the outside.  It’s not my intent to gather sympathy nor is it my intent to speak for everyone.  I will just share my little story so that you will perhaps gain some insight and understanding.  So here we go…

I won’t go into all of the medical details of what happened to me….the short version is they thought I had MS for a few years until I went to the MAYO Clinic and they decided that it was CFS and Chronic Migraines.   But what I will tell you is that no matter what the diagnosis or label of it is, I have spent over 12 years struggling almost daily.   I have occasional days that are almost what I vaguely remember as “normal, but for the most part,  my new normal is a whole different BEAST!

I wrote a post last week about how there are wonderful gifts to be found in every situation and I totally stand by that!  But the reality is also that with a chronic illness that has lasted over 12 years, my life has gone through some changes.  I have made peace with these changes for the most part, but it wasn’t always easy.

I think when I first got sick, I spent the first few years concentrating on getting better.  Most people do.  It’s the natural response.  I tried all sorts of doctors, all kinds of medicines, holistic approaches, you name it.  And advice came out of the woodwork from everybody!  Believe me, if I thought it would help, I either already tried it or it went into the heap of NOPES!  Anyway, the harder I tried to get better, the more miserable I became.  The reality of some things is just…it is what it is.  I’m not a quitter.  I’m not against trying something if a good option comes up.  But I had to get on with living my life.  I had to accept my new normal…..sucky as it was….it was my life.   And that felt better than fighting with it all the time.  And THAT is when I was able to see the gifts start to appear!

The reality of living with a chronic illness is rough.

  • I miss a lot of events.  Important ones.  I can’t be in big groups or travel in the car when I’m not feeling well.
  • I have lost a lot of friends.  They get tired of my canceling and rescheduling and my not being able to talk on the phone (talking on the phone makes me sick and gives me a headache).
  • I can’t shower sometimes for days.  Showering takes a ton of energy go sometimes getting ready to go somewhere takes all of the energy and then I can’t follow through with going out
  • It’s almost impossible for me to plan in advance.  I don’t know from one day to the next how I will feel.
  • People see me in public and think I must be better.  The fact is I wouldn’t be in public if I wasn’t feeling decent.  The next day I will probably be crashed and look horrible.
  • There are people that don’t believe in invisible illness.  That is beyond hurtful.  I can’t even talk about it!
  • People make comments about how nice it must be to be home and not have to work.  Kills me!  I have been fighting for a way to work from home for years!!  I lost my ability to get disability because of my situation in my previous marriage of not working while raising my kids and supporting my then husbands job.  Being sick with no income is not fun!
  • I mean this with total respect…..but when someone has cancer or is in an accident, people rally around them and their family to support and help them through it.  With chronic illness, there are no get well cards, no support, no anything.  You are just sick day after day after day.  It will not end.  It will probably not get better.  It more likely will get worse.

Be kind to that person parked in the handicap spot that looks fine.  They probably aren’t fine at all.  Have compassion for everyone.  You have no idea what their battle is.

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In gratitude/ musings

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14 Comments

  • Reply
    Savanna
    January 26, 2018 at 7:51 am

    It is a struggle to try and do normal things again, when your body is far from normal.

    • Reply
      LeeAnn
      January 26, 2018 at 1:53 pm

      Savanna,
      That is sooooo true! And we don’t get a day off, do we? I hope you will visit my blog regularly, as I hope to share ways to cope and would love your input. 🙂

  • Reply
    Barb Nichols
    January 26, 2018 at 2:04 pm

    I recently heard “our struggle is our story.” Thank you for sharing your so poignantly. Blessings new friend!

    • Reply
      LeeAnn
      January 26, 2018 at 2:07 pm

      Thank YOU my sweet new friend! This one was a hard one to write!

  • Reply
    Lisa
    January 27, 2018 at 10:09 pm

    <3

  • Reply
    Caz (InvisiblyMe)
    February 1, 2018 at 1:32 pm

    Such a spot on post that really gets to the hard hitting realities. “With chronic illness, there are no get well cards, no support, no anything” – I think that’s sad but true as well and it can make coping all the harder because it’s a constant battle for us that can go almost unrecognised by those around us.x

    • Reply
      LeeAnn
      February 1, 2018 at 1:43 pm

      At least we know we aren’t alone….and that is certainly something!

  • Reply
    Cher Duncombe
    February 10, 2018 at 6:47 pm

    I have felt so lonely, even though I am married and have children. While my husband is very empathetic, no one can truly understand chronic pain unless it has become a life partner, as mine (and yours) have. I identified with your every thought, but strangely, when you spoke of how difficult is is to get ready for an event, I got tears in my eyes. I have finally begun to say no. No, I’m sorry, but I cannot fly up for graduation, or no, I’m sorry, I can’t make it to dinner tonight. Yours is a voice in the wilderness, and I am so grateful to have found you. Wishing you a Blessed day, minute by minute.

    • Reply
      LeeAnn
      February 10, 2018 at 6:55 pm

      Awwwww, what a beautiful comment. You have made every frustrating moment with this blog more than worthwhile! I am so happy that you have found some comfort here and I hope you will keep coming back. Please don’t hesitate to reach out to me on the facebook page as well http://www.facebook.com/LeeAnnCottageLovely I am hoping that this blog eventually inspires a community of like-minded individuals that can support and befriend eachother. I am so glad we have connected!! I look forward to getting to know you better XO

  • Reply
    MiMi
    February 11, 2018 at 12:55 am

    I loved your last comment about how you feel when others have cancer or are in an accident. When I first got sick another girl at work got breast cancer at the same time and they had t-shirts with Team Lisa on them, took her dinners, and basically treated her like a queen. While I got sicker and sicker and eventually they “let me resign due to illness” after I ran out of my FMLA days. No support at all. This was at a state education agency with all professionals and I am still very bitter about this even today! Thanks foe expressing it also!

    • Reply
      LeeAnn
      February 11, 2018 at 1:00 am

      I felt pretty uncomfortable writing that because I know the general public won’t understand, but people like us totally do. We endure such incredible pain and illness and with it comes none of the understanding and support that those with “real illness” get. It’s just so sad. Hang in there….and come back and see me 🙂

  • Reply
    Kanchan
    February 12, 2018 at 6:00 am

    I totally understand as I face the same reality everyday . To a normal person I look fine but not a day goes by without reminding me that I have to be careful & can’t eat every available food , cocktails which I used to love or miss my hot packs while going out in winter of course but in summers too as air conditioning kills me . So everyday is a new challenge. Your chronic illness never let’s you forget that you are not normal like everyone else. But I am fighting my battle everyday, to look normal.

    • Reply
      LeeAnn
      February 12, 2018 at 1:33 pm

      I am so sorry you go through this. It is so hard. I hope you will come back and we can walk this journey together.

  • Reply
    Selina
    February 21, 2018 at 12:34 am

    Beautifully said! Chronic illness is such a tough journey for sure! I read somewhere recently that you don’t get it until you “get it”. Interestingly, I too was thought to have MS for years until I went to Mayo Clinic too! They ruled out MS and I have several conditions, some are “as close as they can get” diagnoses. Thanks for sharing!

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