4 Reactions You Receive When You 'Reveal' Your Illness

Since the 10th of May is the World Lupus Day, I felt the importance of talking about it. It has officially been a year since I was diagnosed with systemic lupus nephritis. It took a year to be diagnosed properly and it was a painful and bumpy road. Before the diagnosis, I was hospitalized for almost a month.

Time flows differently in hospitals than in the “outside world,” as I still call it from time to time. One could easily forget what day it is as dates melt into one another. You are almost living in a different plane of existence, living your life by the rhythm of the hospital: Test, then more tests, doctor visits, lunch. The only breaks are from it when someone from the outside world visits or calls.

When I finally got my diagnosis, I didn’t know how to react. I had no clue what lupus was, what was going on with my body and no one bothered to explain it – not even the doctor. So, the obvious question came, “Who am I going to call?”

I called a friend, who told me to call her anytime if I need to talk. I rarely call, I absolutely hate talking on the phone but desperate times and all that jazz. But her reaction confused me at first, since she didn’t say anything, didn’t comment on my situation and my problems – and I don’t really blame her. I guessed it shocked her. Only silence answered while I was crying on the other end of the line, getting more and more awkward as the minutes went by.

I don’t know what I was expecting, maybe a small, “I don’t know either what’s going on, but I’m still here for you,” or something along that line. But she didn’t say a word. When I asked her if she was still there, she answered with a short, “I have to go,” and hung up.

I was standing there in disbelief, staring at my phone and felt like I was punched in the gut. I didn’t dare to call anyone else, because what if their reaction would be the same? So I stayed silent.

When I got home from the hospital a week later the first thing I did was to trying to catch up what I missed and speak to those who I missed a lot. The friend who I gave the call refused to answer for a while, communicating only the bare minimum until I straight up asked her why she was avoiding me. And then it came like a slap in the face, “Lupus doesn’t even exist.”

I was taken aback by that sentence and couldn’t say anything at the moment. I didn’t even know how to react to something like this, but while I was baffled she continued. She told me to stop pretending I was ill, everyone knows I’m just doing it for the attention.

After that reaction, I was obviously avoiding everyone, afraid to tell what I was going through. But you cannot just keep one month of hospitalization in secret, and when I finally “revealed” my illness I got a huge variety of reactions.

1. The one who denies it.

Like the one friend described above, I was shocked to see that people who I considered as close, life-long friends were not only questioning the reality and the validity of my illness, but straight up denying it’s existence.

It’s extremely hurtful since not only is it a punch in the gut, but it’s also dangerous since this person won’t respect your boundaries and limits. They usually doesn’t want to see the illness, don’t see the person, but the version of the one they want to see…The one who they knew from the start and want to “get them back.”

They might seem to be helpful, kind and accepting at the first time. But, as time flies by and there is no “progress” in your condition, there is no sudden cure and they might give up after a while and turn hostile towards you.

2. The one who wants to “cure” you no matter what.

I’m talking about the one friend who always has something up in their sleeves, a new diet, a new therapy, medication, vitamin, ect. The one who sees a problem and wants to solve it usually no matter what.

Sometimes it can be helpful and I do recognize it that all of this is out of good will, but good will only goes so far. It doesn’t matter to them if you asked for it or not, if it’s available for you financially or physically, or if it’s dangerous for you.

This one person who seems to have a suggestion every time wouldn’t dare come near me and wouldn’t ask about my progress or my general well-being. In contrary of the ones who deny the illness, this friend wouldn’t see the person, rather only the illness. They see the “problem.”

This might escalate to abusive extents such as they will always find something to point out, something that you are not doing right or good enough to their standards.

“You are not positive.”

“You are not believing enough.”

In time you become the metaphor for “not enough,” and would wrap you up in a blanket burrito and lock you away from every trouble possible.

3. The one who doesn’t know how to react.

Usually the ones close to me belong to this category. It’s really up to the connection between them and the ill person, how their relationship will go on further. Will they stay or not? Often they slowly fade away from your life, as if either they or you never existed in the first place. They might switch between categories. One moment they deny and in the other have a suggestion or an often unwelcomed remark.

They want to help, that’s for sure. But since they don’t know how to do that, they’ll eventually disappear because of it.

But then there is the exception.

4. The one who is there no matter what.

They are so few and far between, every one of them needs to be cherished. They are the ones who are willing to listen, willing to help, and will actually help you if you ask them. However they won’t be offended if you refuse their offer. They will respect your boundaries, even when it fluctuates drastically.

They may not understand you perfectly since they cannot be in your shoes perfectly, but that doesn’t change much of the fact, that they are still there and will hold your hand when you need it.

They are the one I live for, and without them I wouldn’t even be here in the first place.

It’s absolutely impossible to determine who will become helpful and who will be hostile after a while. It may seem that the best solution is to shut oneself in and not interact much or at all. But in the long-term, that’s not a solution. We all need and deserve a support system in our lives. You deserve all the respect and validation you need.

I can tell you that chronic illness, let it be lupus or not is indeed real. That’s why we, warriors need to be there for each other, especially when there’s no one else.

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Thinkstock Image By: avemario