On August 8th our ME community honours Severe ME Understanding and Remembrance Day, this year and every year. Rachel M. shares her thoughts on living with Very Severe ME …
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 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.
Do you have thoughts, experiences, and suggestions that you would like to share with us?
Image by Gabriel Alva from Pixabay