Article Very Severe ME: Are Intimate Relationships Possible?

Very Severe ME: Are Intimate Relationships Possible?

On August 8th our ME community honours Severe ME Understanding and Remembrance Day, this year and every year. Rachel M. shares her thoughts on what it's like living with Very Severe ME …

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By Rachel M.​

Hello. I’m Rachel from Queensland, Australia. I live with Very Severe ME. My Very Severe ME is clinically confirmed, according to the Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners (ICP).

I believe I had Mild ME since childhood, however, the unfortunate misdiagnosis of depression and its treatment triggered it to deteriorate to Very Severe ME rapidly.

As anyone would do in my situation, I have gone through the trauma with the healthcare system and dismissive doctors, and roller coaster rides of the grieving process for the lost life, career, sense of pride, achievements, independence, freedom, dreams, future possibilities, places to belong, marriage, etc., etc.

As I got over the intense grief, my aspiration in life has shifted from success to purpose. My current project is to bring clinical care to people with ME in Australia, starting from Queensland. The project turned from a personal one to an official one when a Not-for-Profit Company was established for the purpose.

Severe ME Understanding and Remembrance Day is this week and I'd like to write about my thoughts and lived experience with Severe ME. With that in mind, I would like to talk about its impact on relationships.

This decision was triggered by a question I recently received.

"Do you think it is possible for people like us to love someone AND have a live-in (or otherwise) relationship with them at the same time, or is it all too much for a person with severe ME and for a healthy person?"

I believe we can love and be loved despite chronic illness and massive limitations caused by it. Love makes us humans and it enriches our souls.

However, I don’t know if we can love intimately. Intimacy involves touching and physical interactions. For a small cohort of people with Extreme Severe ME, an affectionate cuddle could be nothing but torture.

I am one of the very few lucky people who met someone special after the Severe ME onset. Before I met him, I existed in isolation, and I experienced the “crushing loneliness” in my skin. I know the pain it causes to our hearts and soul.

Eventually, I made peace with the reality that I would live in the isolation for the rest of my life. Having no expectation for the relationship probably worked in our favour.

His existence created a place where I belong, and it made all the difference in my life. He filled up my Maslow’s Hierarchy of Needs. That is not a romantic way of explaining the special person in my life, but I believe people who exist in isolation can appreciate the expression.

It wasn’t long before the reality hit. I learnt that I cannot live with a busy person.

While receiving the much-needed care and support, my Very Severe ME couldn’t tolerate the constant sensory stimuli overload, a household with cleaning chemicals, loss of my limited productive hours after midnight that caused me to feel the loss of purpose in my life, etc.

I also realised the unfillable gap between the one who lives with Severe ME and the one who cannot get it. He thought he could help me. But the symptoms/impairments caused by my Very Severe ME were something he never knew existed in his world, and struggled to accept.

We ended up living separately. Our relationship is better this way.

Now, back to the question.

When we are homebound, we don’t have an opportunity to meet people. And if we do meet someone, there is a massive burden to explain our chronic illness and its symptoms, limitations, impairments to the person. Then, there is this anxiety if this person would accept it or judge us.

So, if you meet someone, become good friends, then consider a relationship, I say, “Go for it!”

When you get to the point of considering the relationship, I share my thoughts on what you need to consider.

A relationship needs hard work.

A relationship has difficult moments, even between healthy and able-bodied individuals. We as people with Severe ME need to be mentally prepared for the difficult times and have a willingness to work things out with our future partners.

And be mindful that there are no perfectly healthy people. The average middle-aged person has two chronic illnesses to deal with. Sometimes you need to listen to your partner with empathy. I know you will be good at this since you already know life with health challenges.

Is there love and honesty?

Love and honesty are especially important to keep the relationship meaningful and healthy. In my opinion, honest conversation on the expectation and frequency of physical intimacy is also important.

Be aware of the power imbalance.

The relationship between a healthy/able-bodied person and one with Severe ME has an obvious power imbalance.

Be mindful of the imbalance and check your self-esteem regularly. The relationship must not make you feel you are less than your partner.

Try to avoid turning into a carer and his/her client. The reason why you entered the relationship must be for love. While it is impossible to eliminate this aspect completely, try to figure out how to reduce the carer/client moments as much as possible.

What do you expect from the relationship?

Think about what a romantic relationship is to you. If you are both happy to have the special person in each other’s lives, there are ways to stay together.

What is your ideal quality time together?

You don’t have to live together and share a bed to be in a relationship. With the complex chronic illness, keeping the “normal” relationship is not likely the case. Invent your happy relationship guideline and make it your “normal.”

Have an exit plan and discuss it at the beginning.

When we enter a new relationship, we all want it to be happy and long-lasting. I’m not saying it is not possible, but there is a possibility it won’t last.

Having the mental acknowledgement that there is a possibility of a break-up could take unnecessary pressure off your shoulders.

I had an open discussion with my partner and an agreement when we decided to live together. We acknowledged that there was a possibility that living together may not work. And if that was the case, he would help me find a new place to live and help me settle in there.

When that became the reality, he honoured the promise. Separation was amicable with the acknowledgement of my Very Severe ME and the disability caused by it. And it helped us to keep the continuing special friendship.

There is no regret. I believed in it. I worked on it. I kept my integrity and honesty, and thus my self-esteem. To me, it is always better to give it a go, even when there isn’t a happy ending. It is much better than pondering "What if?" for the rest of my life.

I have friends who have been able to keep long-time relationships with their partners and spouses despite their Severe ME.

I acknowledge some people cannot have an intimate relationship due to their Extreme Severe ME. I wish things were different for them. And I hope there will be an effective treatment for all of us with ME.

Because we are all different, my thoughts and experiences are never intended to be advice. I hope my experience and thoughts help you to make your decision. And if you decide to give it a go, I wish you all the best in your journey.

~ Image by Gabriel Alva from Pixabay
 
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Thanks for sharing your story. I'm sure it's a difficult topic for many of us.

My personal experience is that it's a struggle with myself that prevents any kind of relationship from happening.

Not only the limited self-esteem and the disability that affects me, but also my own expectations, how I'd approach a relationship, and how this isn't consistent with what an average person expects from their life.

I also don't feel like I want to put this burden of a disease on another person, making another person suffer when they could have a careless life without me. Because when it comes to ME, there are always moments when caring is in the center — caring because you feel unwell, caring by supporting you, caring by listening. If I love a person, how can I put this on them?

I'm sure it's different when things naturally come together from a friendship. I think that it can be an enrichment for people to care for someone else. But with ME, there aren't so many positive feedbacks and rewards. It's inherently difficult to manage. Most people nowadays have very different expectations. They seek excessive lifestyles, full of activity, while having the full comfort and no responsibilities. Who is truly altruistic and what's the chance they meet someone with ME?

I'm still hopeful I can get there one day. Either to having friends or a relationship. For now, I'm sure I can not have more than a few family members in my life because relationships need to be maintained and the maintenance needs energy.
 
My friend requested to post her comment anonymously.
I'm grateful for her time, energy, efforts and spirit to share her thoughts and experience for the Severe ME Understanding and Remembrance Day.

===
From a Severe ME sufferer.

Here below is my contribution to the raising of awareness of Severe ME/CFS for Aug 8 Severe ME Day.

I have sent it to a fellow sufferer in Australia for her to post at Phoenix Rising (minus any identifying details but including a link). I need to keep it anonymous as I am writing it in haste, unedited, in an effort to contribute in time for Aug 8.

I am a female suffering Severe ME/CFS non-stop for the last 20 years. Here is how it started and where I am today.

Twenty years ago I was suddenly stricken by a strange painful viral illness. It knocked me off my feet and gradually but quite quickly worsened. It felt like I was suffering pneumonia, leukaemia, meningitis, rheumatism all rolled into one.

I was 47 y/o and living alone. My GP wrote fortnightly sick notes for my employer (a Land Agent) stating "viral illness".

After six weeks, when I was in so much pain and could barely walk, starting with my thighs feeling weak and heavy, the sick notes changed from "viral illness" to "stress related illness" (read depression/mental illness).

I could not convince her that I was not depressed or that I was physically ill in pain from head to foot including my brain.

Six months later she refused to issue another sick note until I saw a consultant psychiatrist she had referred me to.

After two visits to the psychiatrist he took detailed history and diagnosed me as having Post Viral Fatigue Syndrome.

My GP was disappointed because she did not believe in PVFS aka CFS aka ME (in those days) and reluctantly wrote a 6-month sick note stating "CFS/ME". I had no idea what it all meant and asked her to spell it out for me.

As this was during pre-internet days, I asked her for information on my illness and how to manage it. She said there were leaflets somewhere around in her office but she had run out of them and wasn't able to print out one for me.

So I asked her "when will I get better?". She answered "how long's a piece of string?". I then asked her "what am I to do?". She said "come back when there is something else I can help you with". I walked out of her office feeling stunned.

After that visit I lost my job and became bedridden for two years with 30 minutes of energy daily to manage basic life.

Over the years, as I invented short cuts to manage my reduced stamina, my energy increased to 60 minutes daily.

Here I am today, 20 years later, propped up on my sofa using a laptop and the internet to communicate and live life.

During the 20 yrs I have been out less than 12 times plus 6 times socially. I am rarely able to have visitors and never for more than 2 hours without it setting me back for several weeks. I feel lucky to have outdoor area but am too ill to sit out.

My energy now varies from 1 - 4 hours daily as I have many systems in place (efficiency, organised, time management, planning tasks in advance, daily diary to do lists) enabling me to do the work of 3 people while propped up on sofa.

I can rarely sit up or stand up for more than 10 mins each time. Most days I try to get up and move around for a few mins every 20 mins to keep fit. Bill Gates says he does tasks in 5 min chunks, I do same all day, every day when I can.

Against all odds I still continue to be a productive and useful member of society. I am an independent researcher and publisher and an anti-poverty (and loneliness) campaigner as a way of helping people around the world at no charge.

I spend most days learning and keeping up to date with what's happening in the world, stopping to help where I can.

Keeping up to date with what is going on in the world helps me to budget my finances: when's best to save or spend.

I shop online and bulk buy groceries at best value prices so my static income stretches in the best way possible.

I do not have a mobile or printer, only a fixed landline, too much work and upkeep. I make the most of my energy.

Sometimes I do not see anyone for six weeks. Going out takes days and weeks of planning like a military operation.

When I return home, I cannot function well enough to take care of the most basic tasks of day to day living and life.

After going out, I have to go to bed for 2 hours every 2 hours for several weeks to reduce fever, muscle and bone pain, sore throat, ice-cold feet. Those are the loneliest of times and remind me of why I don't go out. Never seems worth the price I pay: the pain is indescribable, like a living death. My best friend is my fab cat. Life would be too grim without her.

Since the Covid-19 pandemic I have been one of millions of 'vulnerable' people advised to isolate and shield. I spent a lot of money on PPE for my helpers. Cost of a 3M mask was extortionate online during the 1st lockdown in March 2020.

Up until 2 weeks ago, I had not been out for 1.5 years or had any social visitors. Some local people agreed to visit to help me out during lockdown. I've always paid helpers double the going rate. They deserve to be paid well. During lockdown I believe it helped them to classify themselves as a "keyworker" allowing them to be out legally.

Over the last 6 months I have lost 4 helpers. I had to let go of one as she refused to be vac cinated. I was advised to steer clear of such people. In the run up to the lifting of co vid restrictions last month I lost two more helpers.

My GP agreed with me that I would not survive co vid in hospital on a ventilator and agreed to sign a DNR (Do Not Resuscitate - Allow Natural Death) form for me. Five weeks ago I lost another helper who found part-time employment in a shop. She lives a 1-minute walk away from me.

A few weeks before that, she was worried about her mother being depressed. Her mother is fit and healthy, in her 80s, plays tennis weekly, enjoying meeting friends, having family stay, plus lots of regular support from family and friends.

So she invited her mother to stay with her for a week and said that during that week she could not help me for 2 hrs. While I completely understood, I was in worse shape than her mother so I asked her to please stop by for a short visit.

She said she could not because she had to concentrate on her mother and had rented a beach hut for a week. I then asked her if she would bring her mother to visit for a short while. She mumbled an excuse that amounted to no.

So I asked if she could visit me just for a short while when passing by my house while walking her dog. She said she had to focus on her mother. I gently begged her to visit me for a few minutes while walking her dog. She declined.

My point is, when lockdown began she became a local volunteer for my street and dropped off an official card into my postbox saying she was willing to do shopping, pick up prescriptions, make a friendly call, go to Post Office, no charge. It was all part of an official local community initiative to help support vulnerable people in their homes during co vid.

As she was quite new to the neighbourhood and had money worries, I offered to pay her for 2 hours 1 day per week to help me with projects I'm working on to stave off loneliness incase the pandemic goes on for years.

Over the six months she helped me, as always, I was generous, thoughtful, kind and made the visits interesting.

She is in her 50s and lives with her husband. They have grown children living away from home so she is used to life's challenges, ups and downs.

I really liked her and was so shocked at her lack of empathy and compassion during my lowest ebb in 20 years (which I didn't confess to her) I cried in bed for two days. I felt shocked, humiliated and hurt, started losing faith in humans.

I am still so upset by this experience. It is so recent I still cannot put it in words properly. It was the first time in my life that I begged someone for help or to visit me. To raise awareness of loneliness I sent her an email that she'll never forget.

Her reply email was cruel with even more of a knock on effect. I have spent the last 20 years raising awareness of the isolation and loneliness that chronic illness (or any life changing event) brings and I am hoping that the BBC will not forget that August 8 is Severe ME Day.

My former organic vegetable deliverer and handyman of 17-years recently sent me a link to a BBC report that he thought was pretty good, given what he had discovered from my experiences. I was surprised he had been listening!

I have not had a chance to read it all. Here is the link:

https://www.bbc.com/future/article/20210609-how-long-will-long-covid-last?ocid=fbfut

PS. Over the last 20 years I still suspect that the virus I contracted was an Enterovirus, probably Coxsackie B virus. About 17 or 18 years ago I spoke to one of the original doctors, before she died, who spent many years working with the doctor who discovered and defined Myalgic Encephalomyelitis or Encephalopathy. She inherited 3,000 of his ME patient files.

I believe that ME/CFS and those who take longer to recover or progress in severity is like Long Co vid today when the lungs are mainly attacked. In my case I believe a virus damaged my central nervous system and lungs (I have COPD) and that the energy problems are somehow connected to mitochondria and the area of brain that controls temperature.

Over last 2 yrs I am being treated for thyroid problems, only discovered after I ordered a test via a private clinic online.

I have not lost hope that I might recover. I feel buoyed up by huge amounts of money now going to research - including $1.5b in the USA - around the world to enable researchers to investigate Long Co vid. I believe they are taking a real interest in ME/CFS which can be mild, moderate, severe, very severe (v severe is being bedridden in darkened room being tube fed). I have had 3 good days in 20 years and cannot understand how they happened but what they proved to me is that any permanent damage has not increased in 20 years, even taking into account that I am 20 years older!

PPS.
Please excuse this lengthy, unedited and not fact-checked comment, trying to do in time for Aug 8 which I only found out about a few days ago. It's the isolation and loneliness I fear for in the new and old ME patients and the Long co vid patients, especially during a global pandemic when most people are not thinking clearly dealing with their own stress.

During the first lockdown I spoke to one of the receptionists at my local medical centre and told her that I had noticed a change in people's behaviour and personality and that it seemed to be worsening by the day. I asked how she and her colleagues were being treated by the general public. She said, when people are truly kind it brings the best out in them but when people are not kind at all, it brings out the worst in them because they were always that way!
 
@BlueCoffeeMug Thanks for sharing your friend's post. I'm so sorry for what she went through with her helper. I can identify with some of what she's gone through.

Thanks, Rachel, for the great article.

It's still Aug. 8th where I live, yay! I was in a long-term relationship when my symptoms worsened. Since he was very non-understanding, I ended up leaving. Now, the thought of being with someone seems nearly impossible. I can sort of imagine it could work with another ME sufferer, but not a normal, healthy person. Being housebound, I've gotten into online relationships with non-ME men, and they can't understand and have even been angry at me for my feeling unable to take it to marriage level. Also, the emotions of falling in love are too intense. So, I heartily avoid getting into relationships, especially with normal healthy people. As Rachel mentioned in the article, the sensory stimuli of having a normal person in the same space would truly be difficult.
 
Rachel,

thank you for this article.
I'm very severe myself and am also engaged. @Push Fwd is perfectly healthy goes to work, can do everything she wants. But she decided to live with me.
Indeed, I need 24/7 care as I'm 100% bedridden, I can't even wash myself on my own. There are also times when we can't see each other for weeks. It's quite a task, but love makes it possible.

@nerd I had these discussions with her multiple times, that I don't want to put this burden on her. She doesn't see it as a burden though. I think it needs a special type of person. Otherwise, it's impossible.

And of course, we both hope that I will improve and that we will be able to enjoy a life of more quality together.

Ibiza is coming. I know that. I just don't know when.
 
I also don't feel like I want to put this burden of a disease on another person, making another person suffer when they could have a careless life without me. Because when it comes to ME, there are always moments when caring is in the center — caring because you feel unwell, caring by supporting you, caring by listening. If I love a person, how can I put this on them?
I can only speak for myself but for me it's not a burden. The love I perceive is so much more worth than a careless life (which doesn't even exists imho because there is always something to care about)

In this case it is wonderful that "caring" has different meanings in english.
In my opinion, the center of love is caring about and for each other. If you love someone, you care about him. You want to know how he feels, what makes him feel good, you want to make him happy as much as possible and - of course - stand by his side. For me that's the case in every relationship, no matter if someone has CFS/ME or not.

I'm an atheist, but I think classic religious vows like "for better, for worse" are very accurate when it comes to the meaning of love.
I'm still hopeful I can get there one day. Either to having friends or a relationship.
I hope you will get there soon. 🙏
 
In my opinion, the center of love is caring about and for each other. If you love someone, you care about him. You want to know how he feels, what makes him feel good, you want to make him happy as much as possible and - of course - stand by his side. For me that's the case in every relationship, no matter if someone has CFS/ME or not.
I agree with you, @Push Fwd . If I were the healthy (or unhealthy) person in a relationship with an ME sufferer, he would never feel like a burden to me. It's an honor to love and care for someone. Unfortunately, I don't think many feel this way, and we would be a burden to them and not much fun as a partner.
 
In this case it is wonderful that "caring" has different meanings in english.
In my opinion, the center of love is caring about and for each other. If you love someone, you care about him. You want to know how he feels, what makes him feel good, you want to make him happy as much as possible and - of course - stand by his side. For me that's the case in every relationship, no matter if someone has CFS/ME or not.

I hope you will get there soon. 🙏

Thanks, you sound like a very kind person and I can relate to your values, let's call them traditional romantic values, quite well. Because modern romance is an activity lifestyle rather than a relationship lifestyle. It's more about being sweet to each other than feeling responsible for each other's feelings and wellbeing.

Maybe it's possible if you really find someone who still cares about shit, in general. I think many people nowadays overshadow their need for caring by excessive lifestyle. Because caring comes with struggle. How uncomfortable.

But I also think it might also be an excuse sometimes because I'm ashamed to be like this. An excuse I'm telling myself to not feel like I missed another chance.
 
Thanks to the author, and each of you for sharing. :)

I am partially basing my response upon the following definition of Intimate Relationships:

"An interpersonal relationship that involves physical or emotional intimacy."

I cannot even imagine making the effort to initiate in-person relations while in the midst of Severe M.E. Doing so (either person) would take courage, intestinal fortitude, patience… um.. all the things a normal relationship requires, multiplied by a factor of ???.

I'm married. And what we have isn't easy. But my wife did (once upon a time) see me as a relatively healthy person before all of this happened. Does that make a difference, overall? I do not know.

Based upon my own personal experience, there's a certain level of functionality and cognitive awareness needed to participate in an intimate relationship. For extended periods of time, I've been a rung or two below that level. And it's forever frustrating.

My recommendation (this may seem obvious) would be to seek out someone who is: empathetic, sensitive, and readily demonstrates emotional availability.

I only ever interact with medical personnel or caregivers, but those types seem most capable of accepting a person as physically incapable as myself. And I feel as though these types more often gravitate towards me (personally) because I am positively attuned, openly vulnerable, while also considerate of their life standing (I ask a fair amount of questions/delving into what makes them tick, etc.). And as others have suggested (here, there, and elsewhere), do not let your illness define you. I did that for a while.

Another option may entail seeking out someone who is isolated or disabled (in some other manner besides M.E.). Perhaps a person like that could better relate.

And if I happened to be single I'd likely be seeking out someone to fill a companionship role, someone who would physically touch me every so often (reminding me of my physical existence), while also having enough commonalities to openly discuss any subject matter under the sun (or.. under the roof!). An added bonus would be finding someone who would encourage and support my recovery efforts.

Of course, this particular scenario doesn't apply to me (except for the fact that I miss having in-person friendships of any kind). If I were in somebody else's shoes (any or each of you), I may well perceive all of this differently.


H
 
Hello, Rachel, and thank-you for opening this door.

I've been in a long-term marriage of 54 years now. My husband has seen my decline first hand, so that helped immensely. He's now 77.

Believe it or not, we still share (although not very often at our age) a physical relationship also. Why? Because he's a kind, loving person and knows that I've suffered not just with ME, but other rather difficult problems also...from a young age. I'll say upfront, that I can bear to be touched, but there are areas that are totally off-limits b/c of nerve damage & my husband understands this.

One thing we always did/do is have physical contact in the way of a kiss, hug or even hand holding. This is important and of course doesn't always lead to sex. B/c he's kind, I make every effort to have what sex I can with him. It's different....you can find your own way on this b/c you know your limitations.

Sure we argue, we're not a perfect couple and I did find that when he worked he would absolutely drain any energy I had. He's a highly energetic person even now.

For my part, I've had to accept that he has other outlets, does a lot of volunteer work (which I also did for a long time) and is a good father to our daughters, who were teens when I had my first rather devastating surgery (this was a long, long time ago).

Yes, sometimes I feel that it's them against me....but is that my problem? His girls are perfect and they both married men just like their father, which is good. My youngest is high-powered herself and makes me feel like one of her work projects. Is she aware of that? I honestly don't know and I don't know how to return to the mother/daughter relationship we once shared. She's very male oriented in both her job and her thinking.

The other, while also in a full-time position is more like I am, so that's easier. So there are all sorts of relationships that we have to juggle, close ones, and it's always difficult.

Perhaps it will be easier to find someone later in life....it often is. Just don't cut yourself off from the world and people in general. Be good to yourself and your partner. And let go if it comes to that. Smart woman who pre-arranged that her partner would help her get settled if they broke up. Keep your thinking flexible and remember that sex is just one part of a relationship. Yours, Lenora.