An Open Letter to Family and Friends

An Open Letter to Family and Friends

Through the Fog

This is an open letter to our friends (fair-weather perhaps) and our family members who don’t understand (be honest, some of you don’t even try). This is not to bash anyone or make you feel guilty, we just want to share our heart with you in hopes of gaining greater understanding and support.

We understand that your life is busy, ours used to be too. It can be very difficult knowing what to say or what to do when your friend or family member’s health situation is chronic and not going away. Don’t get tripped up on that though, we still want you in our lives. We need you to keep us in the loop of your life, it really helps us when we can focus on others.

So, what would really bless us you might ask? Simple things. Spend 30 minutes with us over a cup of coffee or tea. Call us once a week just to catch up on each other’s lives. Send us a card or a book you think we might enjoy. Pray for us. Bring a meal or fresh-baked cookies. Simple things.

Please don’t forget about us and drop out of our lives. It makes a complicated situation more painful and lonely. It’s so hard feeling socially isolated! When you invite us somewhere or include us in your plans, we may have to cancel at the last-minute. Don’t take it personally, it just may mean our energy or pain levels won’t allow us to follow through. Just like we wouldn’t take it personally if you had to bow out because you had the flu or a migraine headache.

Genuine interest

Ask us for a good book or website that you can read to better understand our condition. We had to do that ourselves in order to better understand our illness. We are happy to answer any questions you might have.

Be willing to be flexible when you come to visit. We may be on the couch or in bed, but we will still enjoy your company. Because of my tailbone issue and the unrelenting fatigue, I spend most of my time laying down. I just bring chairs into my bedroom for my guests. Even though having company exhausts me for several hours afterwards, it is so worth it!

Show a genuine interest. Ask about our day and what we do to cope with our symptoms. Be positive in your comments or questions. Ask us how you can support us. Let us know you’re available if we ever need to talk, that is such a precious gift to give. For those of us with young children, offer to take them for a few hours so we can nap or just rest.

Please remember we are more than our illness. Just like you, we love to talk about all kinds of things not related to our illness — books we’re reading, TV programs, sports, current events, our kids, work, and so on.

You are a very important part of our journey, and we truly desire to maintain the relationships that are so important to us.

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.

26 comments

  1. Angela Joosse says:

    At first my only comment I wanted to leave for this article was a very heartfelt thank you.
    The reason, I finally felt validated. Even though I do not suffer from fibromyalgia physically as the author, the emotional and mental toll dealing with what a person goes through from diagnosis and from family and friends, it is all around debilitating.
    So a more then blessed thank you.

      • Angela says:

        I think Robin MAY have guessed(?) why I felt validated although to me at first her letter is such peaceful and friendly suggestive advice.
        At first to me, this undiagnosed, all in your head,you just don’t want to….blah blah blah made me feel minimized, invisible,angry and worse.
        I’ve lost… and now I’m found. Because I..ME.. won’t be defined by a disease or a name or any other personin along in my life. Whether they used to call me friend or wife but couldn’t support me then.
        I am not quiet to those who know me =) but i am not one to join groups or websites.
        Robins letter spoke to my heart in a way no one has in 10 YEARS!! I can only speak for myself when I say that each of us matter.
        I found my worth through the letting go of the left over guilt and shame that wasn’t even my burden!
        Blessings… Angela

    • karen anderson says:

      I have had fibromyalgia and chronic pain syndrome for over 30 years. I have been misunderstood and denied treatment from doctors who didn’t believe I was in pain. I was finally validated by a Pain Management Clinic with Kaiser Permanente and have been getting support, including meds, since earlier this year. It is truly a blessing.

  2. Amanda Ohlsson says:

    Thank you.

    This is an amazing article and has helped me explain to my family and friends what I’m going through.

  3. Em says:

    If I thought this article would help my family understand-it will not. They just do not get it even when I have tried. This article is helpful to me as a “real” person who went from to success to failure in the blink of an eye. My family does not believe what I am going through and I continually get kicked to the curb as a head case.

    My life surely seems to be over.

    • Denise Bault says:

      Em, Many times I have felt the same way. I have lost contact with dear friends , at least I thought they were, and family members because of this disease. (Including a twin sister who could not care less.) It is truly heartbreaking, but if you re-open up your heart, new friends will come. I have a truly wonderful relationship with my brother, which I might not have had, had my sister not turned her back on me. I have also had to get rid of toxic people in my life, like my mother. The good news is that I now have a wonderful “surrogate mom” who not only cares about me, but has actually taken the time to understand this bizarre illness! She knows it is real!
      She is the mother I wish I had had. I feel so blessed to have her now. So, your life is not over and you are not a failure. It’s just a lot different. Pray. Try to have patience, as good things and good people will come into your life. I promise. Your fibro friends understand. I understand. God understands. Sometimes I think we are put through this horrific test for a reason. (Maybe we’ll all become Angels?) Peace and Love to you and remember to take good care of yourself! You deserve it!

      • karen anderson says:

        Losing friends and family is truly part of this deal. I have long-time friends that have just gone away and I have made many new friends that love me and understand that I have chronic conditions to deal with. Family? All gone. They think I am a hypochondriac and a pill popper who uses mental illness as an excuse. It was sad when they left and I still miss them once in a while but my life is so full of new friends that I don’t really miss them anymore.

      • Em says:

        Pleas do not misunderstand. You sound like you are young. This Fibro has left me w/ no one because I was always the pack mule/work horse.
        Not feeling sorry for myself. Not a pessimist-a realist. I cannot be the same active person I always had been and I just recently hit 65. An old and useless person that is failing what you see as a test.
        I only see one option for dealing w/ this test.

        • Kim Johnson says:

          Dearest Em, You must give yourself time to grieve for the old you. The new you, the woman who is only 65, will be an interesting person you must take time to get to know. Don’t be mean to her, listen and be gentle to her.

          You may like this new person much better. You will find peace and you will find purpose. And you will be loved.

      • L. Calder says:

        I have opened my heart many many times. All I get is more heart break! It is so sad. So I’ll just sit in my little house and cry. My Mom is the only one left, shes 87. She just tells me I have to find a doctor that can do surgery and “fix” me. So I’m off to cry and do dishes everyone left when they left the house to go out to the big world.

        • Denise Bault says:

          Crying is cathartic, so go ahead and have a good cry. We all do it, often at unexpected times. Your dear mum is from a generation where everything was either fixed by surgery or a pill. That’s just not the way it is with fibromyalgia. And as for doing the dishes, save them for the folks that dirtied them – or do them when and IF you feel like it. I personally am tired of cleaning up after people who just “don’t get it!” What we often fail to perceive is that we are going through a grieving process. We are grieving the loss of who we were, what we did, what we were going to do, etc. Some days I’m in the anger stage – which is just frustration and hurt turned inward – and some days I feel I am finally accepting that this is just the way it is going to be. The blessing of this site is that there are people who know and understand what you are experiencing…and there are a lot of good people out there in the world. Perhaps you need to change the folks you’re around? It may take time, but there are those who care and I am one of them!

          • karen says:

            I have had fibro and chronic pain syndrome for over 30 years. I liked what you said about the grieving process because I realize that I am still going through it even after all this time. I had a lot of promising things happening in my world and they were all taken away from me because of my illness. Makes sense to me!

      • Em says:

        Thank you Robin. This brought a smile to my face. Some days are better than others. Do you experience the same. Anyone I know just does not understand. So hard to plan for anything. Does this make sense to you? Yes, trying to reach out to the older generation. I was always a hard worker and enjoyed working and then my whole body/mind just seemed to stop. I ended up kicked to the curb as a head case and filled full of some really horrid meds. I finally fired all shrinks and went in search of what was going on.
        Finally received the diagnosis and felt like I had been handed a death sentence.
        Everyone who knew me as energetic and happy has gone a way.
        Not self-pity as I am a fighter-my brain says “go” and my body does not listen.
        My apologies for dumping.

        • Robin Dix says:

          Em, never apologize for sharing your heart. Everyday seems to be different. It’s been a rough couple of weeks for me. Time changes definitely affect me. It is hard to plan things for sure. I no longer apologize if I need to cancel at the last minute. I need to take care of myself, we all do

    • karen anderson says:

      No kidding! Most people I know couldn’t handle the chronic pain and fibro at all. It is even difficult for them to understand our pain! For me, age makes it worse.

  4. Barbara says:

    Wow happy to read the comments that definately relate to how I am feeling and suffering..the family and friends that turn their back..the good and bad days the mental challenges..I ve had this over 20 years..it’s getting worse now 62..and have pushed myself endlessly under others expectations..no more this is real this is hell and I m no longer in it alonr..Thank You for all your comments I feel at home now..zits a daily struggle and minute by minute at times..I am no longer going to feel guilty about not being able to do what I ve always done…Never give up but Please be kind to you!!

  5. Craig Braquet says:

    It’s great to see you use the term “we are MORE THAN” our illness. There is a GREAT patient experience website called PatientsLikeMe.com They have recently started a video campaign called MoreThan. You can find it on YouTube. It explains just what you have said. We are more than our illnesses. Keep up the good work.
    -Craig Braquet

Leave a Reply to Denise Bault Cancel reply

Your email address will not be published. Required fields are marked *