From the moment I got the diagnosis I’ve only looked forward. I thought I accepted it quite quickly as I began to take steps to learn how to manage my life with this illness. However, with hindsight, I’ve come to realise that the process of acceptance has taken time. Acceptance does not just come with admitting that there’s something wrong and then realising that you need to act. Accepting actually comes with acting upon the advice and making the necessary changes. Most vitally I think it entails letting those closest to you into your pain and suffering by keeping the lines of communication open. It’s about teaching them what you are feeling and how they can help. Ultimately it’s about making yourself vulnerable. Vulnerable by letting them into your life more than you perhaps normally would.
Vulnerable. I’m sure most would deem it a negative word. It has negative connotations of people in financial, mental or emotional need. The most vulnerable people in society are the homeless, or living on the poverty line, people with special educational needs, people with mental health issues and those who are disabled. They’re vulnerable because they wholly rely on others to help them live as full a life as possible otherwise they struggle through each day without any improvement to their situation.
Am I vulnerable?
When I got the diagnosis I didn’t immediately perceive myself as vulnerable. It wasn’t until someone mentioned it that I realised how much this word applied to me. Yes I am still able to drive, go to work part time, walk for a short while and see a friend for a short time. However, I cannot live my life as fully as I once could. I depend on my husband to do the majority or all of the house work. He will do the driving when we go somewhere together so that I can make the most out of the time we have at the destination. I can no longer walk to the local shops so I have to drive. I must carefully consider the amount and length of activities I complete each day. So yes, I am vulnerable. Vulnerable to work place policies that force you into a situation that you had not anticipated but cannot do anything about it; vulnerable to heightened fatigue if I do not manage my daily activities and rest well; vulnerable to the judgement and intolerance of those around me who are ignorant to this illness and who may influence my emotional and mental state to the detriment of my own health, albeit temporarily.
Vulnerability can have positive connotations
As far as possible I am viewing this vulnerability as positive. I think this is because I am being proactive in seeking support where necessary from the appropriate bodies. Also by surrounding myself with people who care, who are trying to understand this condition so that they can better help me. Thankfully they know me well enough not to pity me. Well, not to my face. There is sympathy but this soon turns to wonder and amazement at how proactive I am being. “but you look so well” they may say. There’s not much I can say to that apart from that it’s an invisible illness.
So I am lucky in that I already had people close to me who care enough who would do anything in their power to help.
So yes, I do rely on others but this is for my own health and to ensure I can still live life as fully as possible. Yet I am not completely powerless as I can take control over what, when and how I rely on others. For some scenarios I have to accept that I have little control, whereas other times I do. This has arisen by understanding myself and my symptoms better; what triggers a flare, which activities have which energy rating, acknowledging that I may not be able to complete an activity in one sitting.
It’s about accepting my limitations, opening myself up to those who can help me and acknowledging that at times I do need assistance.