I have always wanted to write some blogs about the challenges faced by partners of people with CFS / ME.
I believe it is a topic that often gets neglected, and is something I’d love to see a lot more resources on.
As we all know, it is incredibly tough for us – the people WITH CFS / ME / Fibromyalgia or any other spoonie* illness – but, on a certain level, it is just as tough for our partners, friends and family watching on, feeling helpless and powerless to take away our pain.
A recent forum discussion on the topic of the support – or lack of – from husbands/partners of spoonie women has prompted me to write this blog post now.
I’ve decided to do it in the form of a letter.
And for the sake of ease, I am going to address it to male partners, but it may be substituted for females in most parts.
Dear Partner/Husband/Boyfriend Of A CFS / ME / Fibro Warrior,
Firstly, let me address the term ‘warrior’.
Yes, I believe your partner is a warrior, NOT a sufferer, though she does suffer daily and severely with this misunderstood illness.
Daily your partner/wife/girlfriend (partner from now on) heroically does metaphorical battle with an illness that is, to you, and every other person in her life, invisible.
Even to her, CFS / ME is invisible.
When SHE looks in the mirror she can’t see it, any more than YOU can when you look at her.
But unlike you, she FEELS the pain, the fatigue, the digestive problems, the bowel problems, the brain fog and all the other ugly symptoms of this ill-defined, mysterious illness.
It is a daily battle for her to get beyond people not believing that she has a physical illness because she doesn’t ‘look’ sick.
And it’s a daily triumph for her to just get through each day – like the triumph of a warrior who has won some significant battle.
But let me say, while I see HER as a warrior, I also see you as a fellow member of this unwanted, undesired and soul-destroying battle.
While I never like to use the word victim in relation to us people with CFS / ME, in terms of the true definition of the word, I do believe both you and your partner are both victims of this incipient illness that eats away at you both – and your relationship – daily.
This wasn’t what you signed up for, was it?
When you committed to love and cherish her, whether directly or indirectly, THIS wasn’t in the original contract. THIS wasn’t what you had in mind for your happily ever after, was it?
It’s okay for you to not be okay with that. Sometimes.
I can guarantee there’s many times that SHE is not okay with it either. She still has to live it though! And so do you.
So sometimes you just have to accept that life isn’t a fairytale, and get on with it the best you can.
In case you haven’t picked up the following messages by now, I want to tell you a few things about being a partner of someone with CFS / ME.
1. You Will Feel Helpless & You Will Feel Powerless
At times you will feel both helpless and powerless. And that’s okay.
What? Okay? How can it be okay? How can it be okay when you can’t do a thing to help the person you love most in the world to feel better?
Well, I didn’t say it would feel okay. I just mean that it’s totally normal to have times when you feel there is absolutely nothing you can do to help ease your partner’s pain, fatigue, anguish and sorrow.
Because sometimes there really IS nothing you can DO.
But there is always some way you can BE that can give you some power back, and help her in the process.
What?
You can stop feeling guilty for a start. Guilt is self-indulgent. Harsh, but true. It’s about you, not her. That’s not going to help her, and it doesn’t help you either.
I’m not saying deny your feelings. Far from it. Acknowledge guilt or anger or frustration if that’s what you’re feeling, but just don’t let it tear your relationship apart (more on that later).
What you can always DO, for yourself and your partner, is just BE there for her.
Acknowledge you would love to help her and you feel so powerless that you can’t.
Acknowledge that, as a man, being unable to help your wife/partner feel better makes you feel like you’re not being a very good husband – a failure even!
Acknowledge that it sometimes makes you feel metaphorically impotent and emasculated to not be able to DO anything to fix the situation.
Our society does little to have you believe that just being there for your wife as a shoulder to cry on, or as a reliable presence in her life who listens and cares, is often all you CAN do, and often all your wife/partner needs from you – and that that is okay!
You being okay with the fact that sometimes, in life in general, and especially when your partner has CFS /ME, you will feel helpless and powerless, will go a long way to keeping you in the right frame of mind to be the loving partner to your wife/partner that she needs.
Because once we acknowledge a feeling and allow it to just be, it usually dissipates and has little control over us.
I wrote a whole 2 blog posts on acceptance, which you might find useful if you apply it to accepting the fact that your partner is ill and that, at this stage, and at this moment, it is as it is.
You can either fight this fact, or you can “choose” to accept it.
What we resist persists. Never four truer words spoken!
2. You Can’t ‘Fix’ Your Partner, So Stop Trying
This relates to the discussion above.
When we feel helpless and powerless, if we can’t just be with those feelings and allow them to pass, we often go on a warpath to find an answer to fix the problem.
Every person with CFS / ME has done the same, and continues to do it on some level.
But the thing is, your partner doesn’t WANT you to fix her. She just wants you to believe her, listen to her, trust her and try to get – on some level – what she’s going through.
If she says she needs to rest or sleep, giving her space and time to do that, without making her feel guilty, bad or wrong for needing to, will go a long way toward keeping the connection between the two of you alive and strong (and winning brownie points – cos they always come in handy!). π
Really hearing what it is that she needs in order to feel most comfortable, nurtured and loved, while managing her illness, is one of the best things you can DO for her.
If you happen to find some amazingly helpful treatment for her while Googling late at night, that will be a bonus – but it’s not the thing she needs most from you on a day-to-day basis!
3. You’ll Never Understand Exactly What She’s Going Through
As much as you try and as loving a partner as you might be, nobody can get inside another person’s skin or mind, so you will never fully understand what your partner is experiencing.
She will desperately want you to at times, which will make you desperately try to, but the best you can do is to get her communication – hear her, value her, trust her.
She doesn’t need you to feel her pain, but she does need you to GET how tough it is for her.
You will never truly understand what she’s going through – only SHE will ever truly know that – but you can GET her communications.
You can acknowledge her feelings and hear her emotional pain, without actually taking them on yourself and allowing yourself to feel disempowered.
A challenge, but possible.
Men seem to find this task harder than women. Our culture and society has been that way for eons.
Rarely would men sit at the pub pouring out their woes to their mates. They have been taught from a young age that you deal with your own problems – sort stuff out yourself – and don’t bring others into it.
On the other hand, women have been taught from a young age to share their woes with their friends and other females in their tribe/family.
There’s an unacknowledged agreement among women that just listening to a friend’s problems, pains and issues is often enough in itself.
By telling another woman our feelings and emotions about something we’re struggling with, we aren’t asking them to fix anything.
We just need to get those feelings and emotions out of our system – to express them to another person.
To know that we have been heard and acknowledged is often enough to dissipate even our strongest emotions.
So, as much as it might go against your grain or your nature, just learning to listen to your wife/partner and getting how crummy she’s feeling can often be all your partner needs at that time.
No need for you to take on those feelings yourself. No need for you to take action on them.
Though the occasional unrequested cuppa, bunch of flowers or shoulder rub is always well received! π
4. It’ll Be Lonely At Times & You May Need To Call In Reinforcements
When she’s wiped out in bed for days on end, and you’re left to manage the house, kids, and meals, not to mention sitting on the couch alone at night watching TV, it will sometimes feel very lonely.
Hopefully this won’t happen too often, but if it does, you’ll sometimes feel incredibly alone and lonely.
And guess what, that’s exactly how your partner’s feeling too. She just doesn’t have the energy to explain it.
She feels incredibly alone in her experience of a stigmatised, maligned illness, where no two people ever seem to have the same symptoms.
She feels incredibly alone laying in her bed, barely able to move or talk, wondering if it’s always going to be this way.
And loneliness, added to feelings of grief of a life lost – your previous life together, her previous life as a healthy person – can often lead to depression – for her AND you!
Don’t think you’re immune.
It’s not only your partner who may experience depression.
You’re her wing-man, and because you’re going through it all with her, PLUS you have your own stuff going on that it’s impacting, you may, indeed, start to get depressed.
If you do, and if you can see it (sometimes we can’t see it ourselves), don’t be embarrassed or ashamed to get some help.
In my opinion every person on this earth could benefit from regular counselling or coaching – just someone we can bounce our feelings and thoughts off who has no direct connection to our lives.
If you feel lonely, and that loneliness adds to helplessness, powerlessnes and frustration, find someone to talk to – professional or otherwise – and let them take some of the burden off your shoulders.
You may feel lonely, and in some ways be alone in your experience, but you don’t have to literally do it alone.
There are people out there who can help – counsellors, coaches (like me!), psychologists and so on.
I’m sure there are even support groups for carers you can tap into, or organisations such as Bent But Not Broken that you can get support from.
If nothing else, try to find a trusted friend or family member who you can debrief with.
Just make sure that they are up to the task. If they are going to just end up more worried about your partner and you, then maybe they’re not the ones to poor your woes out to.
(Counsellors, psychologists and psychiatrists usually have a mentor to debrief to on a regular basis, which help them to continue to do their job in a balanced, helpful way).
5. You’ll Sometimes Feel Angry, Frustrated, Scared & Many Other Emotions
I’ve kind of covererd this already, but these emotions are often overwhelming, particularly for men (in my opinion) because our society usually encourages men not to express emotions or to express them in unhealthy ways.
If you can look at this journey through CFS / ME with your partner as an opportunity to learn and grow, you will be a much better partner and person in general.
It might confront you at first, but taking this opportunity to really get to know yourself and learn about WHY you react in certain ways to certain things, will help you grow wiser and more self-aware.
This can only be beneficial to your relationship with your partner, in my opinion.
Learn to manage your emotions by acknowledging them, and looking at where they originate from.
Self-help books are great for this, and if you’re not a reader, then Audible or similar audio book apps will be a great help to you.
Two books I’d suggest looking into are The Shadow Effect by Deepak Chopra, Marianne Williamson and Debbie Ford, and The 3 Laws of Performance by Steve Zeffron & Dave Logan (particularly the second half of this book).
If you’d like any other recommendations, I can give you lots, so just comment below, Tweet me, message me on my Facebook page or even email – Louise@GetUpAndGoGuru.com.
Let me assure you, if there were already any cracks in your relationship (and there always are, however small), or issues you or she has not dealt with (and there always are!), they WILL be magnified 1000-fold by the stresses your partner’s CFS / ME / Fibro puts on your relationship.
You and she want every tool you can get your hands on to work through this stuff or things will go downhill very quickly.
A training and development program I often recommend (as I’ve got so much out of these programs over the years), is The Landmark Forum and all programs offered by Landmark Worldwide (formerly known as Landmark Education). You might want to look them up!
6. The Best Thing You Can Do For Her Is Believe Her
That might sound like a big statement.
There may be a lot of ‘best’ things you can do for your partner who has CFS / ME.
But I can guarantee that if you take the track of not believing she has the symptoms she says she has, and not believing they are as severe as she is saying they are, then that’s not going to go well.
You chose this person to be your partner for life.
NOW is the most important time in your relationship to show that you trust her and believe her.
You may have your doubts that someone can really feel THAT tired or have THAT much pain so regularly, but if she’s telling you she has it, you need to believe her.
It is not all in her head. She’s not imagining it. And she’s not going crazy or just depressed or stressed.
What makes her sometimes feel like she’s going crazy, get depressed and stressed is when the people she loves the most don’t believe and trust her.
If you trusted and believed enough in your relationship to marry your partner, have children with her, or otherwise seriously commit to her, then trust and believe her when she tells you she has CFS / ME / Fibromyalgia and all the symptoms that go with it.
It may scare you, it may confuse you (as to how to deal with it), and it may worry you, but invalidating her reality or minimising what she’s going through will just increase her stress, exacerbate her symptoms (and possibly accelerate your trip to breakup-ville!).
If you feel worried, scared or confused, that just means you’re worried, scared and confused.
It doesn’t mean that what she is saying is not true or that she is mentally ill, rather than physically ill.
7. Communication Is Key
This goes for any marriage or partnership, not just those involving one partner with CFS / ME.
But when chronic illness and pain are involved, communication is even more important.
Let your partner know if you need a little time-out.
Schedule it into your week if that’s what works for you both.
Talk these things through. Let her know your fears, your frustrations, your worries and woes.
If they are about her, it’s okay to let her know.
She might feel a bit guilty, but you can assure her that there is no need (and maybe use the lines I used right at the start re guilt – what’s good for the goose … π
And if your fears, frustrations and woes are about something completely separate to your wife, don’t think you’re burdening her with your worries and concerns.
She signed up for that part of the partnership too! It’s quid pro quo here.
If there’s a misunderstanding or cross-words are spoken out of emotion, clean it up as soon as possible.
Don’t let negative emotions fester between you.
If you’ve said or done something you regret and are sorry for, apologise. As much as your pride may say otherwise, it makes you a bigger person to say sorry when it’s called for.
CFS /ME / Fibro puts the person living with it in extreme pain, fatigue and discomfort.
Sometimes they will act out their frustrations and fears, and you’ll be the recipient of this acting out.
It’s not nice for either party, but it happens.
And it’s okay to expect her to apologise if there is something to apologise for.
But try not to hold a grudge or take offense too easily.
You wanna know why she takes it out on you?
Because you’re the safest one to take it out on, as unfair as that may sound.
Why are you safe?
Because she trusts that you love her enough to still be there in the morning!
It doesn’t mean you have to take constant abuse, but please see it as the compliment that it is.
It means something that your partner feels she can trust you to always be there for her no matter what, and that she knows you love her enough to forgive her if she acts out her frustrations and fears on you occasionally.
Ultimately, you are warrior partners in this journey/battle called CFS / ME / Fibromyalgia.
This life isn’t easy and it’s certainly not fair, but, when we have a partner who is our best friend, lover, and partner in life, whether they are sick or completely well, it is an incredible gift.
Cherish that gift, do your best, and love each other.
That’ll certainly be a good start anyway!
Yours Sincerely
Louise Bibby
As usual, that was longer than expected, and even then I just scratched the surface of the multitude of issues that CFS / ME / Fibro brings up in relationships.
Let me know what you think of my ‘letter’ in the comments section, over on my Facebook page (just hit 200 Likes – big milestone!! π or Tweet me.
It’s been a while between drinks from #21 in this series to #22, but I hope it’s worth the wait.
I needed the break – much easier to give advice than take your own! – and I’m working on getting the last 9 blogs of the 31 Days To A Better CFS Life series out as soon as possible.
Keep Smiling π
Louise
Β * Any reference to Spoonie or Spoonies refers to people with chronic illness and/or pain – a term that came from the amazing blog – The Spoon Theory – by Christine Miserandino. Read it if you have never done so. It’s worth it – and very much related to the topic today. Give it to your partner to read to help them understand what your experience of ME / CFS / Fibro is like!
Related Posts
Day 1: 31 Days To A Better CFS Life β 3 Myths of Acceptance That Hold Us Back
Day 2: 31 Days To A Better CFS Β Life – It Is As It Is. Choose It!Β
Day 3: 31 Days To A Better CFS Life – 5 Ways To Control Our Thoughts When In Overwhelm & Despair
Day 4: 31 Days To A Better CFS Life – 6 Things You Can ALWAYS Do Despite CFS / ME
Day 5: 31 Days To A Better CFS Life – 7 Ways To Focus Your Thoughts On Something UpliftingΒ
Day 6: 31 Day To A Better CFS Life – Being Present – 7 Simple Mindfulness Techniques To Help Manage CFS
Day 7: 31 Days To A Better CFS Life β Learning To Ask For Help β 5 Simple Tasks You Can βOutsourceβ To Help Manage CFS
Day 8: 31 Days To A Better CFS Life β Discover Podcasts β 5 Steps To Finding & Listening To Good Podcasts
Day 9: 31 Days To A Better CFS Life β Listen To Your Body. I Am Today!
Day 10: 31 Days To A Better CFS Life β 10 Ways To Nurture Yourself & Fill Your Bucket
Day 11: 31 Day To A Better CFS Life β 5 Ways To Combat Spoonie Mother Guilt on Motherβs Day!
Day 12: 31 Days To A Better CFS Life β My 5 Fave Ways To Connect With The Online CFS / ME Community
Day 13: 31 Days To A Better CFS Life β How & Why Audiobooks Are A Great Illness-Management Tool
Day 14: 31 Days To A Better CFS Life -10 Top Audiobooks I Recommend
Day 15: 31 Days To A Better CFS Life: 5 Tips For Getting Tasks Done When You Have CFS / ME
Day 16: 31 Days To A Better CFS Life β What Are You Struggling With Most Right Now?
Day 17: 31 Days To A Better CFS Life: What Are You Doing WELL In Managing CFS / ME / Fibro? What Are You NOT Struggling With?
Day 18: 31 Days To A Better CFS Life β 3 Things I Struggle With At The Moment & How I Manage Them
Day 19: 31 Days To A Better CFS Life β 101 Ways I Manage CFS / ME & Electrosensitivity Pain
Day 20: 31 Days To A Better CFS Life β 5 Benefits Of Writing To Help Manage CFS / ME
Day 21: 31 Days To A Better CFS Life β Gratitude is Healing β 5 Ways To Practise Gratitude
Day 23: 31 Days To A Better CFS Life β 7 Healthy, Safe Ways To Release Emotions
Day 24: 31 Days To A Better CFS Life β Letter To The General Public From Those With CFS / ME / FM β Part 1
Day 25: 31 Days To A Better CFS Life β Letter To The General Public Pt 2 β How You Can Support Someone Who Has CFS / ME / FM
Judi says
Thanks Louise for that beautiful letter! It hits the nail on the head – I’m sending it to my hard working amazing hubby and sharing it on FB. I try to constantly show my gratitude for his hard work and endless love, but you have put those important thoughts and great advice down so clearly (amazing to a be-fogged brain like mine!!) and I’m positive he will appreciate your kind thoughts!
I’ve just discovered your blog and look forward to reading your other helpful entries.
Kind regards – Judi
Louise Bibby says
Thanks Judi. I’m so glad you got so much value out of the post. I must admit it was quite an emotional one for me to write. I didn’t realise it would be until half way in when I was metaphorically standing in my ex-husbands’ shoes. I have 2 ex-husbands, but the first one bore the brunt of the worst phases of the illness, especially the electrosensitivity.
It’s so lovely to hear that you have such a supportive husband. Both my husbands were too. My first husband was unendingly supportive in the most trying of circumstances. He always had a smile on his face and kept me smiling too. We had a great relationship, but the pressures of the electrosensitivity (in particular) just wore him out mentally. It was a real shame … understatement of the year! π
Anyway, great to hear from you. I’m so glad you found my blog, and I hope you enjoy my other blog posts. You’ll maybe see one of my most recent posts announcing my blog is now a podcast on iTunes (or 48 of them are so far!). The link for that if you’re interested is
I’m very excited about that new development after 12 months in the planning & execution! π
Looks like you’re an Aussie from your email address. Look me up on Twitter or Facebook and say hi there!
Keep Smiling
Louise
Dennis says
A very good letter: nail on the head at every stage. Now, can you use your skill and knowledge to write (or have you already written) a letter to the sufferer about his/her partner please?
Louise Bibby says
Thanks Dennis! I apologise for not replying earlier. I intended to and then forgot. I remember reading your comment and thinking it was such a great challenge to see how I would tackle writing a letter to the person with CFS/ME about his/her partner. It’s still on my to-do list (with many other things!), but it’s definitely something I see as being valuable. Whether I’m up to the task is yet to be seen. I’ve only ever been the person who has been ill, NOT the partner, although I have witnessed my 2 partners over the 20+ years of the illness who’s shoes I could probably attempt to put myself in.
Stay tuned π
Cheers
Louise
Rob says
Louise, that was a wonderful insight to how others feel/cope with partners with ME-CFS. whilst it is always about our poor partners who are suffering (over 7 years now) it is also differcult for those supporting. As a typical guy dealing with the extra workload ironing, cooking etc etc is realativily easy – and something im happy to do so my wife can rest, I find dealing with the emotional side much harder!
My lovely wife has gone from a confident, caring and capable friend to one that struggles with any conlict or disagreement with anyone and struggles to rationalise the situation which then esculates out of all proportions. With two teenage children who also find it differcult with mum being happy one moment then shouting and screaming at them the next.
I love my wife but find it differcult supporting my wife emotionally without trying “to fix things” and managing my boys feelings who struggle with theirs mums ups and downs. my wife tends to blame me for the lack of calmness, which i find hard not to get upset by.
Reading you open letter has made me realise that her blaming me is actually a compliment as she knows that no matter what I’ll always be there for her.
Thank you
Rob
Joachim Bates says
I have been dating the most wonderful girl for 2 years, with a relationship deeply faceted in every area. A couple months in the warning signs of fibro appeared, and progressively got worse. I supported her wholeheartedly, apdapted and cared for her. At this time we began to Inmesh and I began to take on her identity and put everything into supporting her. We went to doctors and I pick up her countless meds, rubbed her back daily, would arrive and cook her food and tried to help her see the good still left.
After these tough but incredible years with the love of my life, she told me two days ago she wants space from our relationship. She thinks we too closely inmeshed and that counseling won’t help while we’re dating. I’m not sure if she letting me off lightly or if it means that I can peruse her once more. Hell, all I can do is cry right now. I’m going to use this time to find myself, enjoy myself and try to do this without her.
It’s by far the toughest thing I’ve ever done, ironically tougher than dealing with actual fibro. I’m not sure where this will take us but she has to find herself and know she can support herself. I’m morning sure if anyone knows of a support group I can join for now to help me through this as all I can do is worry about her.
Fibro is a terrible thing and dealing with it in a relations requires continuos counseling throughout to ensure you have the tools to deal with it correctly.
Louise Bibby says
I’m so sorry I didn’t see this comment until just now Joachim. I’m so sorry to hear about your situation. I do hope things have improved since you wrote this comment. If not, please contact me directly at louisebibbycoaching@gmail.com and I’ll have an email or Skype chat with you. Cheers Louise
DidSou says
”
This wasnβt what you signed up for, was it?
When you committed to love and cherish her, whether directly or indirectly, THIS wasnβt in the original contract. THIS wasnβt what you had in mind for your happily ever after, was it?”
I did sign up for this. Just becouse I started relationship with her knowing that she has cfs. I did read about cfs and I continued relationship. It was 2 years ago. And I am wondering occasionally if I did right decision, perhaps not, I dont know sometimes.
Louise Bibby says
Thank you for this comment. When I wrote this post, I was mainly addressing it to people whose partners became ill after they started their relationship. You make a very good point in saying that some people DO know what they’re signing up for – or at least most of it. I’m glad that was the situation for you and your partner. Regardless, having a partner who has CFS/ME or another chronic illness every day can wear you down, but so can other things in any relationship, so it’s not just illness that contributes to some relationships “wearing out”. I really hope you continue to navigate the bumps, twists and turns that are involved in any relationship, and thanks for reminding us that there are some people out there who go into relationships with those of us with chronic illness, fully aware of what they are signing up for!!
All the best to you
Louise
Anita Lim says
Thank you for a wonderful post.
I’ve also written about being in a relationship with someone with ME/CFS – http://anita-lim.blogspot.co.uk/2015/11/living-with-loved-one-with-chronic.html