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Two decades ago, when I received the first of many disabling diagnoses, I went through psychotherapy to deal not only with the new disability, but family issues, childhood abuse, etc. During that therapy I learned the ‘golden rule’ (as I like to refer to it) of coping with a disability or chronic illness… “It doesn’t define who you are.”

More than one therapist/physician encouraged me to stop worrying about what other people think or feel about my health issues, that I was not ‘letting anyone down’ by being ill or unable to continue doing the things they had come to expect from me over the years. They reassured me that friends and loved ones would understand and I’d be surprised by how much support I’d find within my closest circle of loved ones.

I was surprised alright!

Right from the very beginning of my journey as a person with disabilities and chronic pain I encountered ridicule and accusation, blame and resentment when my health problems interfered with plans friends or family had made. In fact, I lost friends and had family distance themselves, feeling that they were obligated to visit or maintain contact, seeing as how I was unable to visit them or do things with them.

I was told that my nieces really wanted their Aunt to go to Hershey Park with them, that I couldn’t let them down. When I explained that I just physically couldn’t do it and we didn’t have the extra money to ‘rent a scooter’ for the day, I was pressured every time I saw my in-laws, my nieces begged me and even my husband complained that he thought it was such a nice idea for all of us to go together, it was too bad the plans were ruined.

In that case, I had acquiesced and agreed. I walked around that park in the heat for 10 hours. By the time we were ready to leave I was physically unable to walk to the car. When I had finally gotten in the car, they decided to stop for dinner and I was unable to get out of the car and knew if I did I was going to be in real trouble. I sat in the car while they went in to eat. No one even brought me something to eat to the car, they had decided it was my decision to stay in the car, must not have been very hungry.

When we got home, I had to have help getting from the car into the house and I ended up lying on my back with my legs propped up for three days, needing assistance to get to the bathroom because the pain was so intense, pain medication didn’t even touch it.

Over the years, since then, I’ve encountered this attitude a number of times. In some cases I’ve written it off as ignorance, in others an indifference to my pain and disability. Recently, I encountered this again, which has brought a lot of those old feelings back to the forefront in my mind.

I had surgery to repair a hernia, which I wrote about on this blog previously. I was told the typical recovery period was 6 weeks, but due to the fact that I have a variety of other health issues my recovery might be as long as 8 weeks.

My cousin told me 2 weeks before my surgery that she was having a graduation party for her son, not the week of graduation or even the week after, but a month after graduation, in a park, nearly an hour’s drive from my home. I told her, upon receiving the invitation, that I couldn’t RSVP because I had no way of knowing how I was going to be feeling or what I was going to be able to do so soon after my surgery. The party was planned for 2 and a half weeks after my surgery. I explained to her that I didn’t want to promise I’d be there and then not be able to come.

The immediate response I got to my honest answer was… “I planned it so it would be like a ‘family reunion’ just for you.” Ok… I knew that was not necessarily true, because she was planning a graduation party for her son with all his friends and friends of friends, but she just could/would not accept that it wasn’t by choice that I might not be there, but quite possibly not physically possible for me.

I had the surgery and was recovering… I had terrible pain and my disability complicated things so much more than they should have been. I wasn’t supposed to ride in the car, to lift more than a glass of water and I was taking pain medication every four hours. I needed help with personal hygiene, dressing, standing and walking through the house. It was a very trying time. My first follow-up with the surgeon wasn’t going to be until 2 days before the graduation party was planned.

During my recovery I heard from my cousin only once, via Facebook, when she told me if I needed anything to let her know.

The ride to the surgeon’s office proved to be quite painful, getting in and out of the car, walking the distance from the parking lot to the office, etc. I had terrible pain and bruising as a result of that, as the surgeon told me the mesh he’d implanted wasn’t settled yet and the pain from exerting myself was a result of the corners of the mesh irritating the tissue in my abdomen. He recommended taking it easy and coming back again in a month. I was instructed to slowly increase activity, but to not push myself, as the procedure could fail and the hernia recur which would be a much more serious situation than I’d just faced.

To date, my cousin has still not spoken to me. She ignores me online, hasn’t called, etc. Once again, instead of understanding, I receive the silent treatment, endured the initial guilt trip about a ‘family reunion.’

What is truly galling is that I have witnessed these same people who respond to my limitation with disappointment and dismissal allow others to say, “I had something else planned that day” or “I really don’t feel like it” as acceptable responses. They easily make excuses for others who are able-bodied and healthy, who obviously don’t see these plans as priorities, yet punish me for being honest about how my health and disability can sometimes affect making plans.

I struggle with these decisions, when I know I have to tell someone I can’t do something that they really want to do, really want to include me in… but I think it’s more of a disservice to them if I lie and go along, ultimately holding everyone up and being miserable, than simply letting them know it’s probably not a good idea.

I would love to be able to socialize more, go out and do things, be more active… it tears me up inside, I struggle daily, with the limitations of my disability and chronic pain. I was always a very active person and having to accept that my life had to change because of something beyond my control has been very difficult.

I’ve more or less decided to just keep moving forward. I’m to the point, after nearly 2 decades of this kind of nonsense, that if people who are supposed to love and care for me aren’t willing to understand, then there is no sense in chasing after them to try to educate them. It’s up to them to rectify things. I can’t take responsibility for the way they react, for their lack of empathy and I can’t allow their attitudes to guilt me into doing things that I know will have serious physical repercussions.

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