I had just completed my final year at university. I was free! Eager to embrace adulthood and all the adventures that came with it. A week later I was struck down by ME/CFS (Chronic Fatigue Syndrome). I went from planning to backpack around the world to struggling to walk up the stairs or make my own food. I went from a life of independence to complete dependence. My family had no choice but to care for me. At the time we didn’t realise how long-term it would be or the profound effect it would have on our relationships. How some bonds would be strengthened and others would be broken.
A survey on my Instagram stories showed 91% of people felt the relationship with their family changed when their family had to care for them. 57% of respondents felt it brought them closer while 70% found it put a strain on their relationship. I experienced both.
Losing your ability to do basic tasks and becoming so reliant on others can crush your self esteem.
I struggled to ask for help in the early days. Partly because I didn’t want to be a burden and partly because accepting help meant accepting my illness. Admitting that I could no longer do certain things. I could no longer be independent.
My role in the family had changed. I went from being the helper to the one always in need of help. I felt I was taking much more than I was giving. This is a common experience for people with chronic illness or disability. In my survey a whopping 90% experienced feelings of guilt and felt they were a burden on their family.
Different types of care
My family members responded to my illness in different ways. There was the Mothering Smothering approach from my mum. The I Know What’s Best For You approach from my brother. While my dad was at the other end of the spectrum with the Hands Off approach, he was happy to help but only if I asked for it. These different styles of caring both have their pros and cons.
When I first became ill the Mothering Smothering approach worked well. My whole life had fallen apart and I was struggling to do the most basic of tasks. Having someone do everything for me, to take the pressure off was very helpful. Particularly as I had not yet mastered the art of asking for help.
However fast forward a few years, I knew my illness, I knew how to manage it, although I was still physically limited I wanted to regain my life and as much independence as possible. Unfortunately my mum and brother continued to try and control me, pressuring me to do what they thought was best for me rather than respecting my own choices and opinions. This led to some very fiery arguments!
A quick scan of the chronic illness forums shows I’m not alone in this experience. So many people are expressing their frustration at receiving unsolicited medical advice, family members passing judgement on their health and telling them how they should manage their illness. In my survey 73% of people felt their family treated them with an “I know what’s best you” attitude and 80% of people had experienced their family trying to fix them. This has been my experience too. I felt my mum and brother stopped seeing me as a daughter or a sister. I became a project, something they had to fix. While their intentions were well meaning I found it incredibly suffocating and frustrating.
Caring or controlling?
There is a fine line between caring for someone and controlling someone. It’s important those with a chronic illness or disability are allowed to feel independent. Although I was physically limited in what I could do my mental function was fine, I was perfectly capable of making decisions for myself yet my mum and brother refused to accept this and our relationship suffered as a consequence.
They believe their role as carer means taking charge whereas my dad views the role of carer as providing support. This is a key reason why my relationship with him has flourished and my relationship with my mum and brother has deteriorated. Dad allowed me to keep my autonomy.
My advice to anyone navigating the patient/carer relationship is to communicate clearly and honestly with each other. Each person’s needs may change over time and it’s important the other person respects this and allows the relationship to evolve. Listen to each other, take on board what the other person is saying and find a way for both parties to regain as much independence as possible