Don’t Waste Your Energy
Recently, we spent the day with my husband’s side of the family. The weather was beautiful and everyone had a great time. Anyway, as we were discussing our vacation plans, someone brought up my health concerns and how the trip would be affected by my health restrictions. One cousin, then started a discussion about my autoimmune disorders. He knew I was immunocompromised, but was unaware of the reasons behind my immune issues. He was surprised to to learn of my medical history (Lupus, Rheumatoid arthritis, Diabetes). This person, who has known me for many years, was surprised to hear of my diagnoses. The following day, this conversation kept rolling around in my brain. He was not the first person whom I have hidden my health from. I keep this secret close to my heart, even though it is a huge part of my life.
Why keep my health a secret?
I can not stand attention. Drives me crazy. I don’t like to have a big deal made of me and I’m certain this trait developed because of my traumatic childhood. My mother’s attention was usually not a good thing, as she was not a nice person. This trait also could have developed due to the years of comments from the people who don’t understand my disease but sure do have their own opinion of it. Remaining silent is much easier than having people bombard me with “natural cures”, some story about how “someone they know has the same thing and they are fine”, how I “don’t look sick” or am “too young to be sick”, or (lastly) how “terrible/tired they feel” as they compare themselves to me. No one feels the same. People can not all be lumped into one box because they have the same disease or same symptom. No two people are the same, therefore, no disease will be the same. That being said, the best line you can give someone with a chronic illness- ” I am sorry you have to live with your illness.”
Repeat: I am sorry you have to live with your illness.
This simple, yet meaningful line – should not offend anyone. {I say should because it seems people are offended with everything nowadays.} “I am sorry” expresses sympathy. Sympathy is accepted by someone with a chronic illness, pity is not. Do not go overboard with how sorry you are, implying you pity them. The next part of this line is just as important as the beginning. “You have to live with your illness”- The fact that this person is going to live with this illness the rest of their life, is huge to this person. Therefore, don’t downplay their illness by treating it as if it were some 24 hour-stomach bug. They really do have to live with this persistent illness, as they don’t get to choose to simply feel better one day. During the good days, the disease is still there, silently waiting. Also, keep in mind that while they live with this illness, they themselves are not the illness. This person has accepted or is in process of accepting their situation, which is not an easy task. Their life has to be adapted to their physical/mental abilities. Adapting isn’t becoming something else entirely, it is changing to fit one’s environment. I am not Lupus. I am not Rheumatoid arthritis. These diseases do not define WHO I am, as my limits do not define me as a person.
A chronically ill person will not have the energy to deal with endless assumptions or questions about them. This goes back to some of the things I mentioned earlier. For example: “you don’t look sick”….well, listen Linda, people can smile to your face and still think you suck. That smile that you see it’s deceiving, isn’t it? We, chronically pained people, have learned to laugh through the hurt and the tears may be hidden, but this doesn’t make them less real. So, please, refrain from endless assumptions/questions. Spare the ill person and don’t make them burn through more energy than needed. They are seriously just trying to get through the day.
Now, going back to the family member I mentioned earlier, he was respectful and did not cause aggravation. We had a decent discussion about my diseases, and speaking about my health with someone who caused no grief, helped me to see that I am ready to stop hiding. Weeks ago, we had a family day planned. A day which was going to be difficult for me. I bought a cane to help me manage. While the cane helped me, the looks I received made the day more difficult. I look rather healthy most days so people wouldn’t see me as someone who needs a cane, since most associate canes with the elderly or someone with an obvious disability. So this decent conversation happening after a day of ignoring ridiculous looks from strangers- it was a gift. I needed to be reminded that not everyone will be judging me.
Hiding my diseases will not help me, in the long run. The more I talk about my health to the people I see regularly, the more “normal” my health will become to them. The people who judge, well, they will judge no matter what I or anyone else will do. They can’t seem to help themselves. Their thoughts do not matter and I can not allow them to affect me. Those people do not know me or understand my struggles. My time is better spent caring for and focusing on myself and those I love. I plan to use my energy wisely. As should you.
