It is far too easy for members of the gastroparesis community to believe that we should suffer silently with our disorder. I see this in my support groups every day. They are full of people who feel guilty for not being able to live up to others’ expectations of them and who fear that revealing their illness will result in disbelief, disdain, or outright harassment. These are people who try to hide their condition from friends and family; who eat when they are out at social gatherings, even though they know it will cause them intense pain; and who try hard to keep from mentioning their illness in any sort of public way. We seem to believe that we are somehow at fault because we do not have complete control over our illness. We are afraid of offending others and of appearing somehow «lesser» because of our disease. We are afraid of disappointing others and of not living up to some ideal we (or they) have set for us. We are afraid of being mocked or misunderstood. And so we remain silent. But this has to change. This has to change because we are starving to death.
I think about what it was like for me when I first got sick, and what it is still like for me now, to some extent. When I was in the hospital, I was so embarrassed about my condition, about my weakness, that I would not even let my parents come to visit me. I simply could not be seen like that! I was vomiting, frail, in agony, and almost completely helpless. I was fragile. Yet, I refused medications, even pain medications, because I had to prove that I was too strong to resort to such measures. I viewed my illness as a failure. I refused to talk about it with anyone, including my family. I remember telling my husband that he was not to say anything about how sick I was to anybody — too much stigma attached.
I strove to keep up with my «normal» life. I tried to eat with my family and attend social events. I pretended (and told others) that I was «fine» and «doing pretty well.» I went about my regular exercise routine, completed most of my usual household chores, and endeavored to preserve my life as it was before my diagnosis. Unfortunately, the result of all of this was a worsening of my condition. It gradually became clear to me that it was no longer possible to live the life I had known prior to gastroparesis. I came to realize that I must let others know things had changed for me.
When I finally decided to go public with my story for the first time, I panicked about this decision. I cried and worried. I was sure all of my friends and family would think I was seeking pity and avoid me because of my revelation. I feared that it might make my friends uncomfortable, or that people would be irritated because I was focusing on my illness. I feared that people would no longer see me as strong or independent. I wondered if they would ever believe me to be a capable human being again. I fretted that they might make fun of me or not believe the severity of my condition.
In the end, I concluded that even if all of that were to happen, it would be better than the alternative. It would be better than being isolated and alone, trying to deal with this disease without any help and without any understanding, cowering at the thought of «going public.» It would be better than killing myself trying to sustain a lifestyle that was no longer really physically possible for me to maintain anymore. It would be better than letting the world believe that my starvation is somehow tolerable or acceptable and should be borne without complaint.
I finally realized that I am not a failure just because I cannot control the effects of my disease. My illness is not something I should have to be embarrassed about. It is not my fault that I am sick. It is not my fault if my friends, family, doctors, or anyone else do not believe me or understand what I am going through. I do not need to feel guilty because I cannot attend social events, or clean my house, or eat a meal that someone has prepared that would put me in agony if I were to consume it. I do not need to feel accountable if I miss the family Christmas gathering or my child’s recital. I do not need to be embarrassed or feel weak if I want a medication to help with my pain. I don’t conceal my disease or its effects from anyone anymore, and when I am asked about it, I tell the truth — all of it.
I should not have to hide my condition from the world — and neither should the rest of my gastroparesis community. We are not weak; we are sick. We should not feel guilty because we lack control over our disease and its consequences. We should not feel weak or somehow at fault for our condition. The truth is that we need help. We are literally «starving» for help, as a matter of fact! We need awareness, understanding, acceptance, better treatments, and a cure. And those won’t come unless we speak up and let people know the reality of our situation. This is not a subject hardly worth mentioning; this is survival.
These days, I refuse to apologize to anyone for being ill or for addressing my disease in public. I tell my story for all to see, without hesitation. I speak with anyone who will listen. I write anyone who can help my community, and I provide any sort of personal information they desire. I would stand on the street corners and shout if I believed that had some value. I no longer feel guilty about being ill or about being unable to control the uncontrollable. I refuse to be quiet any longer, and I encourage my GP community to raise their voices as well. Our silence must end if we are ever to become visible. It must end if we truly want help. Speak up and be heard!