An Open Letter to a Friend Who Doesn’t Understand My Fibromyalgia

An Open Letter to a Friend Who Doesn’t Understand My Fibromyalgia

Through the Fog
This letter is for you, my dear friend. I know that fibromyalgia is a difficult illness to understand, even for me. I wanted to let you know that I miss your company and sharing gossip, coffee, and just laughing together. I miss you.

I’m going to try to explain some ways that fibromyalgia has changed my life, and ultimately parts of our friendship. First, you need to know that it’s not contagious. However, fibromyalgia has been debilitating for me in many ways. It has also changed me, but it doesn’t have to completely change our friendship. Let’s work together so we can continue to be friends for a very long time.

Because fibromyalgia involves both the brain and the nervous system, it impacts every area of my body. Think of how you feel when you have the flu. You get achy all over, your balance is off, you have no energy, and all you want to do is sleep. It takes days before you start to feel like yourself again. This is my world every day. The thing is, although I have some good days, this is never going away. I don’t say that so that you’ll feel sorry for me, just as a point of clarification.

Although I won’t always be able to attend functions, meet you for coffee, or go see a movie together, I still want to spend time with you. One thing that’s been hard for me is the inability to be spontaneous like I used to. I kind of have to plan things in advance. Even then I sometimes have to cancel at the last minute if my pain or fatigue are off the charts. I’m hopeful you’ll give me grace for those times.

I’m always happy to answer any questions you have about fibromyalgia, and I promise to stop if your eyes start to glaze over. I sure don’t ever expect you to change your plans because of me, I just want you to know that I’ll be thinking of you and wishing I could be there. I think one of the more difficult aspects of fibromyalgia is the loneliness. So even if I can’t go out, it would be awesome sometimes to have you over to hang out and share a glass of wine or a cup of tea. We can make some popcorn and watch a funny movie.

Just like you need to vent sometimes about the stuff going on in your life, I do too. Real friends stick together and are there for each other. So even though my life has changed drastically, my heart is still committed to our friendship. You are super important to me, never forget that.

***

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

52 comments

  1. Em says:

    I understand what you are saying. Too me this sounds too much like a guilt trip to friends, etc. I would not say these things to another as even though I have fibro and some other things this sounds like a guilt trip and a ploy for sympathy.
    Perhaps speaking laconically and somehow not grasping the true intent. I could say these things to the illness though.
    My opinion only. Perhaps today is worse than others for you. I truly am sorry if a friend has let you down. The only way to understand is to live with it and I would not want another to understand fibro in this manner if I could prevent it. Very few know I have fibro-yes, I am a closet fibro female. Far less safer.
    I appreciate all you do though.
    Blessings

    • Helen says:

      Em Wow!
      Please edit my conversations with all my friends, doctors, colleagues! I OBVIOUSLY have the same symptoms and same view as you.
      Who is this author Robin Dix who DARES to explain her illness in her own way!

      Why on earth would you make the author defend herself!

      @Robin?
      Don’t EVER apologize again for something from the heart! we women apologize WAY too much in the face of rancor or attack!

  2. Dear Robin, Thank you for putting into words, what I feel everyday. I am blessed with good friends. However, I can’t seem to get it across to them how ill I really am.I am no longer able to pick up and go.I need to plan my outings,and even then,I have to cancel often.I live alone,and often wonder where this illness will take me.It causes me tremendous anxiety,and depression.I’m in a flare now,and am not able to garden,which is one thing that brings me pleasure,and a sense of accomplishment.I will be 69 in August.I have been living with fibro for 20 years.I’m tired,hurting,and very sad today.If only we could go to bed and feel rested when we wake up (if we are lucky enough to sleep.) Take care, and blessings to you and all of our spoonie friends!!

    • Robin Dix says:

      Cheryl, thanks for sharing. It must be really hard being alone. I hope your flare ends soon so you can get back to the gardening that you love. Hugs!!

    • Ann says:

      Cheryl so sorry to hear you are having such a bad day…I have spent years having to let people down. Thankfully after going to Cognitive Behavioural Therapy. I have accepted this debilitating illness and my wonderful Son’s have been my rock…. Friends and family are finally slowly understanding this condition…. Stay strong we all have to be there for each other. I am looking for a support group to join.

    • Rochelle says:

      Hi Cheryl

      I relate to how you feel, as I also live alone (other than my two fur babies). This illness can be incredibly isolating, which is why I think it’s that much more important to have sites like this where we can support each other, even from a distance. I hope you are feeling better and will continue to connect with people as much as you are able to.

      Peace and blessings!

      • Marita Mitchell says:

        Hi Robin, my worst story was when a beloved student got married. We wondered why we hadn’t been invited because both my husband and I had given her so much care and support! The bride has just told us that a colleague told her, Oh, don’t ask them, Marita won’t come in any case.
        I was so angry and hurt! I know I often say no, but I also make myself go when it’s really important. Still, it should have been my choice.
        Thank you for your blog and this letter, there are so many things we need others to understand.

  3. Patricia Favalora says:

    That letter was wonderful and perfect! Thank you! I know it will be printed and shared over and over again!

  4. Denise Bault says:

    Great letter, Robin! There is also a letter out there called “letter to normals.” Touches on similar points as well. You can google it.

  5. Cindy McBride says:

    I would have liked to post this to my FB page addressed to my family and friends who don’t understand. I won’t though because whenever I do post ANYthing about my fibro NOBODY comments, likes or otherwise. Because of that I have sunk just that much deeper into loneliness and depression.

    • Karen Daundets says:

      I completely understand! It’s the same with me! No one ever acknowledges anything I write about fm but I do think part of it is people just don’t know what to say or are scared to say the “wrong” thing. If they don’t understand fm it just makes it worse

  6. Ann says:

    Please keep posting… I have posted this for the first time today on Facebook and I don’t expect many people to comment, as many people are still not sure about Fibromyalga….Please don’t give up… Let’s just keep Fibromyalga out there in the news… Expect nothing that way you wont be disappointed…. Keep posting… We have to support each other, people unfortunately are still ignorant to this horrible condition…. Keep strong!

  7. Em says:

    Hi Robin-personally, I get it. I too was speaking hypothetically and soon learned to not try and get any one else to understand. I think what you contribute and the encouragement you provide is admirable and I have learned a lot. An older retired “Jill” of many trades and proficient at some. I finally accepted that this illness does not go a way and the more I endeavor to explain the farther a way I feel. I miss having my health and vitality and still learning new ways to do things that once were so easy-challenges have become hurdles I walk around as I cannot jump, crawl under or move the hurdle…said w/ my usual attempt at comic relief.
    By suggesting you were brainstorming and not actually planning on announcing this to any one in particular makes sense. I am known for thinking outside the box too much. An attack of the “what if’s” grabbed me by the throat when I read your hypothetical words.
    Just too much segregating or so it seems at times. All of these actions of awareness about so many things. Mayhap a tad overwhelmed so back to my paint brushes and ice pack.
    Blessings Dear One

  8. John says:

    Thank you Robin!
    I have had a very difficult time explaining to others what it is like to have Fibro and your letter will help greatly.

    Thank you again.
    John

  9. Christine Creekpaum says:

    I am saving this letter. One of the best I have ever read. I have recently moved so don’t have any friends here yet. I want to tell you all I have had 3 absolutely perfect days. No pain! I was able to be up all day and yesterday went and ran errands on my new Can Am Spyder. It is a three wheel motorcycle with two wheel in front. I left about nine and did not get back until two. It was so wonderful. We will see what today holds

  10. Ann says:

    Hi Christine great positive news… Don’t push yourself too much. Try and pace yourself, I am sure that’s the advice you would give us Robin.

  11. Dear Ann and Rochelle.Thank you so much for your kind words,and for responding!!I have been in counseling also.It really helps me,and I have a counselor,who also has fibro.I lucked out!!! She understands.I have been very pro-active dealing with fibro,but seem to have lost my determination lately.I know this can be a slippery slope.Need to get back on the horse,so to speak.Wishing you peaceful,and pain free day.

  12. Carrie Anton says:

    Robin, excellent article! I think everyone with fibro can relate to this. I will definitely share this with a few people in my life who I feel really need to know this. Thank you!

  13. Yvonne says:

    Hi Robin
    I think your letter was inspirational honest and truthful anyone with fibro knows how it is to live with this disease and I don’t us that word lightly Disease because it is.
    Because fibro is left hanging in the world of medicine and being made to feel it’s n your mind fact is it’s soul destroying unfortunely for suffers we fall in to two cathories those who go underground and to the world we paint a big smile on our face laugh and joke and if asked how are you ‘not a bother’ true s your crying behind your painted smile
    Never wanting to be tagged with the other side constantly moaning as you can see people doing a runner when they see them coming it’s a lonely painful beast of a disease and if left unrecognised by Doctors who can blame bosses friends and families not understanding our plyth
    Ps for those who think the letter is looking for sympathy play around with it simply because it’s true.

  14. viviane says:

    Robin, thank you for the letter, I think it will be very helpful to my friends, would not try to send to my husband or family, but my friends will read it, I have already send many of your articles to some friends and they said they had no idea about the way this disease affect Us…..they are nicer to me now, but, yes, it is lonely, my friends of course do not change they life for me, but at least they now understand….we need to reach out to people who care,,,,,the others can….jump…..

      • viviane says:

        Hi Robin, they did say they understand now a little more, it is a very difficult disease to understand even for Us and for doctors, but I run here in Boquete, Panama, a Ladies support group for the last 7 years and every years a lot of american ladies come here to retire, so, it is getting more and more difficult for me, but I manage, it is actually good for me too to be with them every Tuesday afternoon, and also, I join a bible study every Friday afternoon and nearly all the Ladies from my group are there too, so, we pray for each other and give support, friendship and love to all….that is why I had to send then some of your articles so they could understand me better,,,,,thank you for your articles, they really help..take care.

  15. Jackie says:

    💚💚💚💚💚💚💚💚💚💚
    I periodically get choking coughing attacks… Its uncontrollable.. It lasts about a minute .. I grab something to eat like a piece of fruit or sip some juice..or even a Claussen dill kosher pickle works great… It comes on usually daily and happens a few times throughout the day.. I think with it possibly might come on with prolonged chronic stress situations… Like my Daughter that is 8months pregnant…just turned 23yrs old yesterday…
    She is going through the hellish nightmare of DOMESTIC VIOLENCE. … As I did as well..

    WOW….
    BUT…ANYWAY…

    DO ANY OF YOU GET THIS CHOKING THING CAUSING YOU TO HAVE COUGHING ATTACKS… NO MUCUS..JUST A HACK COUGH CAUSING ME TO ALMOST THROW UP…
    UGHHHHHH SIGHHHHHHH
    💜💜💜💜💜💜💜💜💜💜

      • Marita Mitchell says:

        I get it too, always think I’m dying when it starts up. A bit of honey and apple cider vinegar in warm water works wonders. Stress certainly makes it worse.

    • Karen Saunders says:

      Jackie, I don’t necessarily get the hacking cough but have found it hard to swallow when I’m eating quite often. I always have water w me to help wash everything down but I’ve noticed this mentioned frequently across many sights.

  16. viviane says:

    I forgot to say, I am 67 and French, my husband English, but not much support here…..we have been here 8 years,.

  17. viviane says:

    Hi Robin, thank you for your reply, No, no ministry but almost, I have a Pastor who attend my meetings and She enjoy it very much, in turn I attend Her bible study and enjoy it too,,,,,yes, my group is to help new Ladies here to adapt and make new friends, I live up in the mountain but not too far and they excuses is that they car cannot reach my home, I think it is because of my Fibro I am not like them, they go for lunches, have many hobbies and I cannot follow, just asual because my husband would not like me to be out too often…I paint and used to teach Chinese Brush painting, now I have stopped for a few months already, get tired, but would like to start again. many Ladies want to learn it,,,,I do my meetings and teaching in afternoon after my lunch at 11am , no breakfeast, I would have an hour rst, after thet I am OK again for a few hours, even manage to go out with friends for diner, early, once a week, so, not complaining, just now life is so different, friends try but do not WANT to understand, they are healthy like my husband said and who want to be with a sick woman??? oh well, I manage and will teach painting once a week again soon….take good care yourself. Hugs.

  18. viviane says:

    Oh I am so sorry Marha, no, that was not for Her to decide, people can be cruel sometimes, but it is just because of they ignorance, forgive hem, take care of yourself, you are worth it…..love you

  19. Karen Saunders says:

    Thank you for sharing this Robin! I also live alone and am scared it’s becoming too much of a “safe place”. Most of my friends have drifted away, partly bc they just don’t understand what fibromyalgia is but they don’t ask much either. When I do try to explain it I just feel like I’m complaining and come across as a hypochondriac. I’ve had to cancel plans so often that I’m sure that’s contributed towards it too. Sadly, it’s made me very gunshy about initiating new friendships bc of this. Right now I’m trying to educate those who truly want to understand by sending out stories like yours. It seems that seeing it come from another source somehow validates what I’ve been saying all along. Fibromyalgia is a “hidden disease ” and we don’t “look sick”. Probably bc when anyone does actually see me it’s bc I’m having a better than usual day! I am grateful for sights such as this one as I finally don’t feel so alone.

  20. Irma Trujillo says:

    People do not understand that it’s not that we have become antisocial, some days it’s virtually impossible to go out at times, just going to the grocery takes so much out of me. I wish I had the energy I used to. I have also put on so much weight, meds., inactive., this illness has taken my life!

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