I am not going to be pretend what lays ahead are an easy topics, and there are no easy answers either. I wont pretend to be an expert on everybody’s experience and circumstances but I will try and write something that might touch on some common features that may have affected all of us.
A lot of support sites I have visited over the years have been inundated with comments and painful posts about being rejected by their friends and family since they became ill. Family and friends can be a big part of the pain associated with these diseases and when we feel abandoned by them it can make the fight so much harder. I really do understand and empathize with all of you who have posted and written to me about this, I too have wept and cried about these issues, but there are a few things that also needed to be mentioned here so that we can get a deeper appreciation of the topics at hand.
We all have a picture in our minds of family and friends sitting by our beds and loving us through hell and high water, like the many movies and tv shows, but that is not always reality. Who hasn’t watched those heart wrenching movies or love and devotion and yearned to be those people? However, Reality ALWAYS looks and feels different. Very, very different. Many of us have felt the loss and ‘rejection’ of friendships and family connections as slowly the years tick by and our lives are very much restricted and ruled by our disease activity. We may find ourselves with only a handful of friendships and family connections left after many years and many different doctors, flares, symptoms and diagnosis. But does the number really matter? Isn’t quality more important than quantity?
When I have had time to reflect and think about these topics I have made quite a few revelations of my own that I find helpful to remind myself during these times and especially when I have felt a friendship ending or a relationship winding up.
Here are some points that I try to remember… I hope they prove useful to you too.
Firstly I remember that during my lifetime there have been times when I, myself, have been guilty of letting down a friend and family member on more than one occasion. In truth, I am no angel and have dropped the ball myself during my younger, healthier times, and even now. We are human and nobody is perfect. I have forgiven myself for those times and I must be prepared to forgive others too.
Secondly, Friends and Family are people too. They have lives. They have commitments. They have plans. They have deadlines, and they have their own sets of challenges that don’t go away when we need them to reach out to us. Its an unfortunate reality of the world we live in that we are all time poor and those that are more able bodied and healthier than us will often take every opportunity to spend any available time doing what makes them happy, and if I am completely honest I WANT to see them enjoying their lives too. I want them to use every working muscle and every pain free day to drink life up and enjoy all it has to offer. If that means that I hear from them occasionally, that is the price I will pay for knowing that my loved ones are happy and healthy and doing what they want to in life. It is what I would want to do myself.
Thirdly, if the Friend or Family member has been particularly cruel, cold, unkind, rude, insensitive or demeaning about your illness you have to ask yourself “is this a healthy relationship to be in anyway?” (irrespective of if you are sick or not!) It may be that the relationship had a lot of other complication and issues despite the fact that you became unwell and the illness just put a magnifying glass over some of those problems or underlying issues. It is a sad reality that just because we are related by blood or been friends for some time, it doesn’t mean you are going to be close forever or that you are not going to grow apart over time. Human beings change. Its important. Its necessary. Its healthy! We change through our experiences and emotional maturity. Its not a straight line. We aren’t all on the same path or level. Sometimes you may share nothing in common with a relative other than an ancestry, so it should not be assumed that becoming chronically ill or having an incurable disease will make you instantly closer or endeared to each other. It just doesn’t work that way.
Also, if you are looking for validation and acceptance from Friends and Family than I believe you are putting the cart before the horse. You must always believe in yourself first. You must accept you FIRST. Your respect and dignity comes from within you firstly, and should never be in the hands of anyone else, no matter who they are or how close they may be. Especially for those who have had a very difficult and lengthy time being diagnosed and treated, you HAVE to believe in your own body and know yourself in order to advocate properly for yourself and your health. Many AutoImmune diseases and chronic illness have NO blood tests and can take an average of almost 6 – 8 years to get fully diagnosed and treated, and then there are always ancillary diseases that can develop and compound the problem. It is perhaps some of the cruelest features of many AI diseases and chronic illnesses and it is a weakness of the medical system NOT a weakness in your character. Validate and respect yourself! I cant stress this enough here, because if we don’t master this early in our journey we can do terrible, terrible damage to ourselves and our coping skills and make the long term battle so much harder. If your Friends and Family really do care and want to understand they will ask questions and educate themselves, if they don’t, it really is a reflection of them NOT you. We learn a lot about ourselves and others during the darkest times. Sometimes we must accept the facts that are staring us in the face. I am not making light of this or trying to make it sound easy, its not, but it is never the less important.
Lastly, the old cliche is true; its quality NOT quantity. I am much happier having a handful of friends and family members (I include my AI family in here) that truly accept and respect me than hundreds of people that don’t accept or respect me. Its true for all of us, able bodied or sick. Not everyone is empathic. Not everyone knows what to say or do. Some people are judgmental and some are more selfish than others. We still live in the real world and getting sick doesn’t make those things magically disappear over night. The mere fact that so many of us have had these experiences the world over means that this is not just happening to YOU. It happens everywhere and everyday. It’s harder because when we are sick we feel like an open wound and we feel like we are being kicked when we are most vulnerable and at our weakest. Loss and grief are also very much life lessons too and we can’t escape them even if we are sick. Quality over quantity. Be choosy where you put your time, love, efforts, emotions and energy. It will make all the difference in the long run. If you have to say goodbye to a friendship or family member or relationship, but do so with respect and acceptance. #Spoiler alert: You will be truly surprised where new friendships and relationships will crop up in the future but I don’t want to completely spoil the surprise for you.
The final f word here is FREEDOM. You will find a sense of freedom in yourself and in your relationships when you truly make a peace with some of these points. When how you treat yourself, how you like yourself, how you respect yourself no longer lays in the hands of how people perceive you but how you see yourself. It really does show us who and what is important in life and the emotional freedom is a reward well worth the fight and battle.