A married couple talks about the impact of M.E.

Can you share a little background about how you met and how M.E. started to impact your lives?

Michelle

When Ian and I got together, we travelled a lot, including to theme parks as we both shared an enjoyment of (in Ian’s case, an obsession with) rollercoasters. In March 2010 I contracted glandular fever very badly. I wasn’t getting better after the glandular fever. I was fobbed off by many doctors, repeatedly being told it was post viral fatigue and it would improve in 6 months. One doctor even told me to go to the gym!

I felt suffocated with pain and fatigue, and fighting to be heard by the medical profession. I changed to a new doctor, who said they would not leave any stone unturned. This led to my eventual diagnosis. I am not a bitter person, but I am still angry that it took 6 years to get a diagnosis. Receiving the diagnosis was a tiny bit helpful. I knew in my heart that I had M.E. and I am annoyed that I was not listened to.

Ian

Before Michelle’s illness we travelled and socialised a lot. All that changed when she became ill and our lives have contracted a lot since then. The journey to diagnosis was a lengthy and frustrating one. Knowing how to manage her illness in those first few years was very challenging. Being repeatedly told she would get better soon only added to our confusion and bewilderment at what was happening to her. The refusal of the medical profession to truly hear Michelle was so upsetting to witness.

How are your daily lives impacted by Michelle’s illness?

Michelle

On a typical working day, Ian kindly prepares my breakfast before he leaves. He leaves it for me in the spare room with the kettle so I am not forced to go up and down the stairs. When I was really ill he would prepare my lunch too and leave it in the fridge. Now I am at a stage where I can grab something from the fridge for lunch by myself. This is normally a salad, soup or a sandwich as I cannot stand for long and prepare something more complex.

I tend to spend the morning in bed. In the afternoon I factor in rest time around activities such as sitting in the garden, or watching TV. When Ian gets home, he kindly cooks our dinner, for which I am so grateful. One thing that has come out of M.E. is Ian’s love for cooking. However, I do miss cooking for Ian and making him a cup of tea. On weekends and when Ian is on school holidays, we plan more trips out. We plan a lot of rest around them. Sometimes we have to cancel those trips if I am not well.

Ian

As Michelle has said, I am now responsible for all the household chores. I am more than happy to take these on. Michelle is always thanking me for ensuring that the house runs as smoothly as possible. I am aware that she wishes she could contribute to the running of the house. When I do those jobs, they are a reminder of something she can no longer do (or she could do but would end up in bed for days).

What are the key obstacles you have faced in your relationship as you have faced the impact of this condition?

Michelle and Ian

We both wanted children. When Michelle was so poorly at the start of the illness, we knew that it would be very difficult to raise a family. It was already a struggle for Michelle to look after herself whilst Ian was at work. Some days she could barely get up and down the stairs, let alone hold and care for a baby. Reflecting on it now, when we took the decision not to have children, even though it was heartbreaking, we feel that it was the right decision.

Michelle

I wish we did not have to constantly change plans, especially last minute if I am really poorly. When we got married we had huge plans to go to places like Florida to ride rollercoasters. That has obviously had to go on the backburner. It is also hard that we cannot see friends and family as often as we like. I cannot thank Ian enough for all he has done for me but I do feel upset at the M.E. that I can’t look after myself for a long period of time. I know that Ian is happy to take care of me. The biggest gift that he has given to me in this illness is that he listens when I say no to things because of the M.E. He will accept my ‘no’.

Ian

Seeing Michelle be so ill and facing our contracted lives have been the biggest challenges for me. No one likes to see their loved one suffering and we have worked hard to maintain a husband and wife relationship and not letting it slip into a carer/caree relationship.

Obviously there are many times every day where I have to perform caring tasks for Michelle. Through open communication, we have not let those elements of our lives form the dominant narrative of our relationship. Michelle has frequently said to me that she does not want to be a “patient” or “a job” for me to do.

Michelle and Ian

It is a constant challenge to explain to people about M.E. and the impact it has on both our lives. People’s responses amaze us… There are some people who get it, whether or not they have had experiences of M.E. or similar conditions. There are some people who don’t understand it but want to learn about it. Then there are others who do not understand: they show no inclination to learn even when we point them in the direction of online information such as the M.E. Association and Action for ME.

Ian was made redundant near the start of Michelle’s illness. These challenges brought us closer together. This did not happen by accident and took a lot of hard graft. We are stronger because of these experiences.

Ian – have your professional skills as a therapist helped or hindered you as you’ve gone through this journey? In what ways?

Ian

That’s an interesting question and not one I had given much thought to before being asked it here. I think my personality type is very good at dealing with what is in front of me. That helps in both supporting Michelle and in the therapy room. Dealing with what is in front of me in the therapy room requires me to be very present and note the subtle shifts in the person I am working with, moment to moment.

Knowing how to validate and support someone’s feelings during therapy definitely helps me to do the same for Michelle. Of course I understand that my capacity to do so is altered by the fact that she is my wife and not a client in therapy. (“Client” is the word the Music Therapy profession uses for the person coming for therapy. Whether that is a good word or not to describe that person is a separate conversation.)

I am also aware of how sometimes I resist truly entering Michelle’s emotional world as it can overwhelm me. To completely feel her feelings of loss and anger towards the M.E. for all it has taken away from her is, on occasion, too much for me. But then I can put my therapy hat on and reflect upon what that resistance might tell me about the depth of her feelings. I then consider how I might, next time, more authentically try and see the world from her perspective.

Words of wisdom? Anything you want to share that has worked really well or advice for others starting this journey or struggling with an aspect of it?

Michelle

The discourse around M.E. is very depressing. I have found it really helpful to find my tribe. I would recommend:

• Pippa Stacey on YouTube and Facebook (her book How to do Life with a Chronic Illness was life changing for me)
• Anna/M.E. myself and I on Facebook
• my local support group CBME on Facebook.
• in her book, Pippa discusses how you can still find moments of joy within your illness, but at your level.
• wherever possible, get rid of toxic situations
• try not to be afraid to say no to situations that will effect your health. My OT told me that it is a positive thing to say no for the sake of your M.E.

Ian

There is no support* out there for carers for people with M.E. and energy limiting conditions that I am aware of. I have had to learn as I go, and be guided by what Michelle needs. Just as Michelle needs support, so do the carers.

Michelle and Ian

* There are some sources of support for carers of people with M.E. – from online groups to books and helplines that can support them. We’ve created a list of resources that were recommended to us.

Thanks for the photo at the top of this page – by Hannes Knutsson on Unsplash