While it is obvious that a person with a broken foot cannot run, it is not always so easy to understand the limitations of a person suffering from an invisible disease or chronic condition.
Although there is a very strong support network for patients with conditions such as diabetes and hypertension, which also cannot be recognized at first glance, people suffering from invisible illnesses related to constant pain (such as fibromyalgia), chronic tiredness or psychological disorders (such as depression, attention deficit or some phobia), among others, do not always receive the same support.
When we live with a family member or friend who suffers from an invisible disease, we are not always sure of the best course of action. So here are some things these people would like us to know before trying to help them:
1. It's important that you believe in them.
No one doubts that a person who has diabetes, right? Therefore, we should also not doubt patients with other invisible diseases, be it chronic pain, depression or another condition.
Keep in mind that the person has decided to open up because they feel confident in you, and it is not easy to talk about a disease with these characteristics. Therefore, we should do our best to show interest and understand what she is feeling, without doubting what she is reporting or judging her reactions. It may be a good idea to do research on the disease to better understand what it causes.
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2. They don't want to talk about it all the time
Yes, it is important that listening with patience and interest, but not always a person suffering from an invisible disease wants to talk about it. Of course we may ask how she is feeling, but we should not do this all the time.
Another attitude that should be avoided is to keep charging if the person has taken their medications, was to physical therapy or anything else they should do to keep their condition under control.
Insisting on talking about the disease can make a person feel as if he is defined by his condition, not as a human being with dreams, goals, qualities and defects like any other. As a rule, it is best to let her bring it up.
3. It's not cool to compare people with invisible diseases
Maybe your cousin also has chronic shoulder pain, or your co-worker is also dealing with depression, but making comparisons between your loved one and other people is not pleasant.
When we say that? So-and-so feels like this but can do such a task? We are not only assuming that we know how one feels more than oneself, but one can also imply that one is not exerting oneself as much as one should, since someone else seems to be better than oneself.
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Also, people with the same condition do not always react the same way to an approach: some may feel better with a hug, while others may prefer to talk or even spend time alone.
4. The disease does not manifest the same way every day.
Do not be surprised if yesterday the person looked great, did a thousand activities, worked, studied, strolled? and today she is down again or in pain. This does not mean that she is lying about her condition, but that the symptoms of an invisible disease do not appear to the same degree all the time.
When we ask why the person is not acting the same way as when he or she looked better, it may sound like a doubt and create a need for explanation that often the patient cannot give us.
5. You Can't Always Offer Real Help
A person with an invisible disease must have gone through many doctors and often invasive tests. So when we ask if she has tried taking such a medicine, make a home-made prescription or anything, without having technical knowledge of the condition, it is quite possible that she may be irritated.
Of course we can share news about a new treatment, for example, but we shouldn't be charging if the person went after it. We must remember that patients with invisible diseases often get unsolicited advice all the time, and that bothers anyone.
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To really help, we can ask if there is anything we can do.If so, we simply must do what we have been told without question.
6. People with invisible diseases remain people
Has your loved one suffering from an invisible disease done something wrong or hurt you? So you should not necessarily spare it from these facts. Despite their condition, they remain human beings, with all their virtues and shortcomings. Of course, we must consider whether the attitude may have been caused by the way the person felt at the time, so it is never too much to approach the subject gently.
We should also keep in mind that one should not stop inviting a person with an invisible illness to social events or avoid resorting to it when we need help. Instead of making a decision ourselves, she will feel better if we let her decide for herself if she is well enough to do something.
7. It's much more than just an invisible disease.
In general, we know that the person needs to make more effort to climb a ladder, feels unbearable pain even when stopped or any other consequence of the disease. However, we do not always realize that there is a universe behind this that we do not have access to.
We do not know what pain really is, how much it costs a person, and what he needs to do more compared to the rest of humanity to simply have the right to exist. Being part of this whole invisible universe requires taking a supportive stance and being careful not to push boundaries.
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But we are also human beings, and we are subject to making mistakes, no matter how good our intentions. In this case, the best thing to do is to apologize and listen to what the person has to say. Do not be martyred: remember that despite the invisible disease, she is a person like anyone else and can understand and forgive.
What Not to Say to Someone With an Invisible Illness - Part 1 (June 2023)
- Prevention and Treatment