Remove “I’m fine and I’m ok” from your vocabulary.
I have found that these words are redundant when you have a chronic illness. I have found that with endometriosis I am either in pain somewhere on the scale of 0 to 10 or I am having an increasingly rare pain free day and I’m feeling great because I am getting an unexpected break from pain.
Words like fine and ok are not constructive; they are the building blocks of a wall designed to keep people out, they are obstacles that stop those close to us understanding what we go through, they are a diversion from those offering help.
For years and years…..and years I adapted I’m fine as my primary response whenever anyone asked how I was: my mum, my partner, my friends, my colleagues. The result of this was frustration; I was frustrated that no one understood me, no one understood why I was so tired all the time, no one offered help or to do things for me when I was struggling. Those close to me were frustrated because they could visibly see something was wrong but they didn’t know what it was, they didn’t know how to help, they were always shocked when I ended up in hospital and they were never prepared for the sudden visits to A&E and the consultant’s office.
Last year my mum and myself had a huge falling out, I had just been discharged from Hospital having been rushed in a blue light ambulance to A&E on morphine and gas and air the evening before. My mum was so shocked by the events that had unfolded before her; to her I had been fine. As far as my mum was concerned I hadn’t been experiencing pain, every time she had asked me how I was I had told her “I’m fine”. I was angry that she didn’t know what do when I was in pain, that she was my mother and yet she didn’t know what help I needed while I was in the grip of a flare up. I resented that she was so surprised by the event since she had a daughter with endometriosis she should know what to expect. What resulted from all this pent up frustration, confusion and desperation was a yelling match that by far out done any we had had while I was a teenager (and that’s saying something, my poor brother hid upstairs the whole time – not daring to move an inch). During the frustration fuelled exchange it transpired that my mum felt lost and blocked out. She explained through tears that I never tell her how I really feel, I never let her know how she can help, I never her in. I just kept telling her I was “fine” or I was “ok”. The honesty and reality of what she was saying hit me like a ton of bricks. What she was saying was true of not just my relationship with my mum but with all my relationships.
That day I began to think back to all those who had walked out of my life because I was selfish, or being an attention seeker, because I’d missed the important moments in their lives: birthdays, weddings, graduations, break ups and nights out. What if I had just opened up, explained how I was feeling, what was happening to my body, how I was scared out of my mind because it never occurred to me that I’d develop a chronic illness. What if I hadn’t told them I was fine when I wasn’t? From that day I made a conscious decision that I would never again say I was fine, I would never again tell people I was ok. I would only be honest and let people in; I would deconstruct the wall I had learned to hide behind.
Since that day I have been fully honest with how I am feeling, what I need from those around me, what does and doesn’t help me. I now let people know how much pain I am in and if I would like to be left alone to get on with things or if I would like them to help me. I let people know when I am starting to feel worse and update them on any improvements. I share stores and articles I find. If I am undergoing a new treatment or taking new medication I let people know how I feel about it, my fears surrounding it and the positives I see in it.
I think this is the single greatest improvement I have consciously made myself. I have honestly never received a negative response from anyone; this new honesty has improved all of my relationships. My mother and I are closer than ever, she is included in my life and by letting her know how I am she is able to be the support I so desperately wanted. My friends understand me better; they do not get annoyed or resent me when I cancel plans because they understand. If anything they show so much interest about my disease. Most people even express admiration for what I do manage to achieve. I am so lucky and feel a gratitude which I cannot put into word for the support, understanding and encouragement given to me from my family and friends.
Be honest with your friends and family, realistically you have nothing to lose. Those closest to you will not turn their back on you; if they do you are better without them. In most cases your family and friends can already tell when something isn’t right with you and by not being honest you are choosing to frustrate a situation, you are choosing to lock people out.
Original post: facebook.com/theendodiary