There are so many times when I have read the saddest stories of times when a Chronically Ill person has been doubted or even spoken rudely to by a close friend or family member.
To feel attacked so close to home cuts deeply and is truly heartbreaking!
No matter how many times I read them it can still make me ache for the person and I empathize deeply…
A recent post by someone in a support group who said they were told by their family member that they “… were sick and tired of all the attention seeking…,” and that the chronically ill person should just “…snap out of it!…”
Whilst I am never going to condone such words or behaviour, I do hope it comes as a small comfort to know that every Autoimmune survivor and Chronically Ill person has lived a version of the same thing; without exception.
We have all felt that cruel knife pierce our hearts and threaten our credibility and self esteem.
It is most cruel because we are so weakened by our illness and grieving the loss of so many things already. These cruel statements tear at us at a time when we are trying to find our new identity and self esteem again, and at a time when we most need love and support.
I have also had these types of things said about me by various people, and it takes a lot to stand strong in the face of such things. Sadly, it is just ONE of the major challenges that almost ALL Autoimmunes and Chronically Ill will face on their difficult and life long journey.
It took many years of soul searching and reflection to try and make sense of why this happens to so many of us. It seems incomprehensible at times! Would these remarks be made to people with Diabetes? Asthma? Cancer? or Autism? … I hope not.
What have we done to illicit such behaviour? The answer is simple. Nothing! We did NOTHING wrong!!
Once we accept that big truth, the rest starts to fall in place fairly quickly afterwards; well they did for me anyway. Once I started repeating OVER and OVER and reminding myself “I did NOTHING WRONG”… it started to give me the buoyancy that I needed to come up for air. Sometimes I have to do this over and over again.
Years later, when I think about these times, I started taking on some new perspectives into these issues…
You see, the other side of our journey and struggle is the way it affects those close to us. These hard times and difficult challenges will make their own natures and issues come to the surface too!
If they are controlling types, they will expect you to ‘take control’ too. If they are the more self focused type, they will not want to imagine what things are like for you and be more focused on how it affects THEM. If they are the ‘denial’ type to dealing with problems then they may wish to bury their heads in the sand and pretend its all an imaginary problem, so they wont have to do anything or change anything for themselves… There really is no end to the spectrum here but demonstrates who THEY ARE and how THEY DEAL with things and it has nothing to do with you or your illness.
We deal with things based on our personality and experiences / knowledge. When we know better, we tend to do better. Providing that is what we WANT to do…
I guess as sufferers we dearly need the help and support of everyone we love and care about to help us get through the challenges ahead, but if those people are struggling with their own issues and limitations then they are not going to be able to offer anything accept judgement and lack of understanding. Although we don’t want this from them, it is one of those things in life that we have to get our heads around.
I remember when I was younger, I didn’t understand many things and many situations, I would make my own assumptions based on my limited knowledge or range of reactions. I made some very wrong assumptions growing up, so I can’t really be surprised when it is shown to me by others, can I?
A better model has been where I have learnt the skills of ‘distancing myself emotionally’ from their comments and lack of empathy, whilst I deal with the higher challenges at hand. I have to be able to turn down the volume of their actions and comments, while I put my self esteem into intensive care AND build it up so that it is no longer an easy target.
I am well aware that this can take many, many years but it is part of the new landscape for me and other chronically ill fighters; Rebuilding and coping.
I try not to take a lot of things personally anymore. I see actions as a combination of peoples education / experience and peoples overriding personalities. i.e. Loving people give love. People who lack empathy and confidence will tend to judge and put others down… These things didn’t change because WE got sick, even though it can hurt us so very deeply.
Developing a thick skin, a healthy self belief, finding new connections, a sense of humour and a loving attitude can be the best use of our time and energy now, because we are not responsible for the thoughts and behaviour of others. Investing time in myself and what I CAN do are things that will benefit me far more in the long run.
I really can’t afford to focus on the things that I can not control or be accountable for.
I also like to make sure that I remain authentic and if someone takes the time and tries to ask questions or educate themselves better in my reality (and the reality of many other fighters) then I will do my best to help facilitate and appreciate that.
My advocacy work is aimed at achieving this goal too. I hope that when people have the information and resources available to them, that they will take advantage of such things… again, it depends on what their nature is. If the CHOOSE not to educate themselves or empathize then no amount of information will change WHO they are. In that case its best just to accept the person for who they are and that may mean distancing yourself from them if they are just going to be destructive for you. Especially if they are going to undo all the hard / good work you are trying to achieve.
In doing so, it helps to let go with a good spirit… It helps ME the most because I am not hanging on to any residual pain and anger. It has no place in the chronic struggle. It really has no place in anyone’s life if you want to live the best life you can.
Its not easy letting go of former close relationships or family members, but like any relationship, they must be based in mutual respect and kindness. I never shut the door on people who demonstrate that they are trying to come to terms and learn better. I am also trying to see many issues through different eyes also. Chronic illnesses have made me more aware of who I am as a person and how to let go of what I am not responsible for. Life has become extremely focused on where I put my efforts and energy these days and what will give me the most return in the long run. Taking back control of how I respond to the blows of life and the comments of others is becoming much more within my control and I have achieved far more self belief and resilience over the past decade than I EVER thought I could.