Family don’t listen: I have had... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Family don’t listen

Jeja
Jeja

I have had fibromyalgia for many years and have somehow managed to cope. Recently everything has become too much but my family won’t talk about it. They seem to feel I should do things differently and get quite cross when I try to explain my illness and I end up feeling like a fraud. I will be 70 next month and this is making me depressed as all I can think about is my own mortality.

27 Replies

Dear Jeja 😊🌿🌸🦋

Hi my name is EvaJo aka EJ and I’m across the pond.

I too will be 70 in April.

I have been dismissed by so many doctors and others that I’ve lost count.

Who diagnosed your fibro?? Could you get a letter with your diagnosis confirmed from the doctor you saw for it?

Then print off the details of fibro that explains it and the symptoms it causes.

There are over 200 symptoms with this condition.

The main commonality that all fibro sufferers have is fatigue. Mine started out as chronic fatigue syndrome. Then morphed into severe fibro from there.

I’d always been strong mentally and physically until then.

At first I felt so invalidated as everyone else gossiped behind my back. Then they avoided me.

I withdrew and depression started to set in when my family and OH accused me of faking and abandoned me. That really hurt and made me feel lower than dirt.

Throughout it all I still knew that this is the truth I wasn’t faking lying or crazy. Sooo I endured it kept stedfast in my faith and prayers and survived it all with sanity intact thank God.

I didn’t have the blessings of this site back then and all of its wonderful members to chat with and be accepted understood and loved.

I’m putting my virtual arms around you giving you a much needed hug 🤗 offering my shoulder to lean your head on and lending my ears to listen to you while showering you with love 💗.

We all need someone at least once in our lives. I have made it my life’s mission to help others however I can because I know what it’s like not to have anyone myself and I don’t want others to go through what I did.

I am losing my eyesight and have days with trouble seeing so sometimes I’m delayed in answering and my fibro fog is rampant now due to my brother once again near death so I may forget to answer. So don’t take a no reply personally. Just remind me if you don’t mind about your post or PM.

Don’t ever let anyone convince you that your life experiences aren’t real because they are your truth.

When people turn against you they are in the wrong to do so. Continue to be true to yourself you will find out who are your true friends. Those who stick by you and support you are your real true friends and they are more valuable than precious stones or metals.

You can always count on someone on here that will come to your aid and will be able to relate and empathize with your plight.

In the meantime don’t give up don’t give in. Keep fighting for yourself because your are valuable and you are worthy to live your life as best as you can NO MATTER what conditions you have.

So put your mortality out of your mind and just take your life one day at a time.

Abundant blessings my friend. Much love and prayers.

EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋

PS. If your depression isn’t getting better then call your GP and explain your situation and ask for an antidepressant. Your mind is the most important organ you have and nothing wrong with meds to help it cope when needed.

Be safe and take care my friend. 💗

Lucy41
Lucy41 in reply to honeybug

Wow an amazing story your an inspiration xx

honeybug
honeybug in reply to Lucy41

Thank you for your kind words sweetie.

🤗♥️🥰🙏

Lucy41
Lucy41 in reply to honeybug

Your more than welcome I’m 41 years old and you are soon to be 70 I really should stop moaning you must be super woman xx

honeybug
honeybug in reply to Lucy41

No hun don’t stop moaning. You have a right and need to do this. I’m just human. I have a strong faith and steadfast prayers that keep me going no matter what befalls me.

Will befriend you too if you’d like. The more the better.

Sending you much love and prayers hun.

EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋

Lucy41
Lucy41 in reply to honeybug

Yes please x

honeybug
honeybug in reply to Lucy41

Welcome to my loving embrace my new sweet friend. xxx

Mille21
Mille21 in reply to honeybug

You sound like a lovely caring person xx

honeybug
honeybug in reply to Mille21

Thank you Millie21

I send you my hugs well wishes prayers and love 💗.

EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋

Totally understand I will be another one who is 70 at the beginning of April and for some strange reason, none of my other significant birthdays seems to have the significance of this one. honeybug, as usual, has done a wonderful post. It is difficult for someone who doesn't have fibro to understand how it impacts every aspect of our lives. I have a group of friends who I went to school with hence us all being the same age, the difference is they are all fit and healthy and I know in the majority they seem to be at a loss to understand what my daily life entails. It must be doubly difficult when it is your close family. I only have my husband who has major health problems himself which makes life even more complex. Do come on here as you will always find someone who is supportive to talk to. Take care.x

honeybug
honeybug in reply to rosewine

😊🤗♥️🥰🙏🕊🌿🌸🦋

Yassytina
YassytinaFMA UK Volunteer

I really still don’t understand why families act this way, what you need is alittle empathy, they need to read up on this condition. Don’t feel a fraud it’s not your fault and none of us have exactly asked for this condition, I’m so glad you have had some lovely responses from Honeybug and Rosewine, take one day at a time , 70 is just a number , take care of yourself xx

honeybug
honeybug in reply to Yassytina

Well said Yassy

👏👏👏♥️🥰

Oh bless you, it makes me feel so sad when I read posts like this, honestly hunni you are amazing do not let anyone especially your family make you feel like a fraud, I am sorry to say they are being really selfish! You are very important to yourself and you need to look after you first and foremost because to be honest you have shared and done it all for them, now it's your turn 🙂 if you need to rest then rest, if you need time out then take it. They may not be willing to talk about it because they are scared, but you can make them realise how precious you are by NOT carrying on doing it all Jeja, just be gentle on yourself and take it easy. Sending big fluffy, gentle hugs we are all here for you sweetie anytime and we understand. X

Well put my friend. 👏👏👏🥰

I'm sorry that your family get cross with you, it makes everything so much more stressful and impacts on the fibro.Something I've used to explain is called A Letter to a Loved One (I think that's the title). It's written in a letter form and explains in detail how fibro impacts every aspect of your life. My husband and adult kids found it useful, helped them understand what fibro entails.

If I can find it again, I'll see if I can send it to you on here or via the forum.

I hope the administrators of the site are ok with this, of course.

In the mean time keep doing what you can, don't be hard on yourself or feel bad about not being able to do as much as you used to, it just makes things worse in the long run.

There's been lots of helpful advice in the replies to your post which is great.

Sending gentle hugs.

I don’t understand why families would be so mean and unbelieving ?? 🤷‍♀️ I would never be like that. They think I’m weak and making excuses 😡🥺😢😒🙁

honeybug
honeybug in reply to Malwimmy27

👏👏👏👏🥰

prohealth.com/library/a-let... think this is the one.

Hi Jeja, I am sorry that you are not getting the support you need right now. One of the problems with fibromyalgia is that it’s invisible. Another is that it sometimes is better, and many sufferers function just fine for quite long periods. Try not to get upset about your family. Easy to say perhaps. But I do find that emotional upset increases my pain dramatically. And they are all no doubt having a hard time too right now. They may well be stretched to their limits and just not have enough emotional or physical strength to support you. If you need assistance with a particular practical task maybe ask them or find someone else to help. And for emotional support there are many lovely people here. Keep hanging on in there. Things will get better. Xx

Jeja
Jeja in reply to BruisedPeach

Thank you BruisedPeach and all my new friends on this for I’m for all your wonderful replies. They have really lived my spirits, so for me today is a good day and I wish the same for all of you. I would like to reply to you all individually, but don’t have the strength at the moment. However, as soon as I am able I will post more messages. I am so glad that I have found this site and all it has to offer.God bless, you are all in my prayers.

Jeja
Jeja in reply to BruisedPeach

Sorry for all the mistakes, brain fog! I’m sure you will all understand that.

Hi Jeja and, whilst sad that we only hear each other's stories because we are all in the same boat, or trying to cope with the same storm😳, I am glad we have a comfortable place to go like this site where we can learn coping mechanisms and also realise that we are not alone in the storm. I am sure it will prove of great assistance as Fibromyalgia has so many and so varied symptoms that one can actually feel totally alone.

I am 80 and have had FM since I was 70 so I was fortunate that my working years were over but my enjoyment of retirement was short lived and I have had to give up so many things. In your case it must be so difficult with the family giving you stress over their lack of understanding and belief. I think the first thing you must do now, having read everyone's heartfelt messages, is to BELIEVE in yourself and know that, with our help, you can cope.

When you say you are thinking of your own mortality, please know that, even with this debilitating condition and the disbelief of others, for a fact it is real. Also because it is so varied means you have to find easier ways of managing the life you lead. It can be rewarding but it does have to be moulded to suit you.....not to suit others. Having given up almost everything, I find staying in contact with those people who can empathise or who care deeply is the biggest motivater in my life, plus pacing. If your family think you do too little then they really must be given the hard facts with the letter Malwimmy mentioned. If they think you don't deal with the condition well, then keep putting the letter in front of them and also read A Buddhist-inspired View of Pacing. We always tend to overdo things on the rare occasions we can get going. The other person to read is Toni Bernhard. She has FM and has coped through nutrition and diet, and she follows and shares beautiful floral art, artists, colourful birds and gives hope when one feels at one's lowest ebb through a Western woman's adaptation of Buddhism.

Don't be afraid to try Homeopaths, Chiropractors, different drugs that a Dr who believes you suggests. There is no one size fits all and we just have to keep investigating by trial and error. Wishing you more peace and so much more understanding from your nearest and dearest. One of the invisible conditions that so few people one meets know about - but it is getting more well known. Look after YOU and your heart and soul. Take special care xx

Hi Jeja, my daughter is a personal trainer and kept on at me to exercise to give me energy. I knew it wouldn’t work. I took her to an appointment with my fatigue therapist (nhs) and it was only then that she understood my fatigue. Could you be accompanied by a family member to a doctor who could explain the condition? I didn’t tell my daughter why I wanted her with me but asked her to accompany me because I hoped she would understand after hearing about FB from a professional. It did the trick but we’re still working on the memory thing 😆 because “everyone is absent minded Mum” 🙄

Love and hugs, we understand 🤗😘

Your an inspiration stay strong 🤗

I cannot add any wisdom to the above, but you have my sympathy. Been there, done that etc. Its a shame family can be worst, when they should be your go to.

Hi there, many folks with Fibro do not get the support they should get in regard to their Fibro Chronic illness. This is because it has received bad press such as @all in your 'head' or if you just did this or that you would be fixed. At one time it was even incorrectly lumped in with mental illness on some forms. All that is appalling and wrong and I am so sorry that your family will not understand. Mine are the same and sort of behave like it is a bad smell when I mention fibro. They feel if I just lost weight and exercised more all would be well. They forget before fibro I used to backpack and canoe and walk miles and was skinny..... but hey you are not your family and you are not defined by them. When they make you feel down challenge those thoughts It is them letting you down not the other way round.I am so sorry to hear of your loss. Losing our most loved one is more than traumatic. Main thing is to take care of yourself extra specially at this time. Managing fibro is a personal thing....pacing is important, mindfulness is important, rest is important, the right meds for you can be very useful too. Be kind to your self and ignore the unkindness of others. I find keeping warm is important for me and I have lots of support pillows in bed to ease my aches and pains. I have gone gluten free which helped I believe, indeed research has just come out to support the view that non celiac gluten sensitivity can be the cause of fibro. I take Tramadol and paracetemol for pain. I take mini rests throughout the day eg ten to fifteen mins with eyes closed relaxing before starting a household job or gardening or before a journey (pre covid) or meeting...it calms me and reminds me to pace and plan and rest and pace and rest again. I do not get things finished but just do them in stages over several days with lots of snoozes in between... no apologies. I hope you can get your fibro settled down and feel better soon. You are not alone. Lots of good advice on here. Take care.

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