Think about what it is like to repeatedly receive frightening information about your health and wellbeing. Each incident is not an isolated moment that one can necessarily take in stride and then move on from. There is a cumulative impact and over time, after hearing enough scary information over and over again, a person who lives with an autoimmune disease may react in a way that may seem like an overreaction to others who do not know what it is like to live with an autoimmune disease. This is something that I wish medical doctors thought about some more. For example, a person living with an autoimmune disease may have an appointment with a dermatologist who tells you that you have active psoriasis and suddenly you start to cry. This may seem dramatic to this doctor; however, what this doctor may not know is that in the last month you also saw a rheumatologist who told you that multiple blood levels were off, you also saw a cardiologist who told you that there were issues with your heart that you had to address, and you saw an orthopedic surgeon because you have significant joint damage and need surgery. Someone who does not live with an autoimmune disease probably would never think that a person would be managing so many appointments in such a short amount of time and let alone having to deal with all these multiple health issues at once. Yet, for people living with autoimmune disease this is quite common. Therefore, a person living with autoimmune disease having to hear that they have psoriasis on top of everything else can feel really overwhelming and immediately crying would be an understandable reaction.
We have all heard of trauma, but we usually think of trauma as one really bad thing that happens that can have lasting impacts. However, sometimes trauma occurs as the result of a cumulative effect of multiple and repeated dangers. If someone repeatedly hears that there is something going awry with their health, this can result in an experience of a type of medical trauma. When people are traumatized, anything that is associated with what is traumatic can lead a person to react in a way that a person who is terrified reacts. For example, crying, experiencing extreme anxiety, having difficulty sleeping, acting impulsively, becoming irritable, wanting to avoid the frightening thing, among other reactions. Of course, not everyone will have this experience just because they live with an autoimmune disease, but it is important to know that if you do have this experience, you are NOT alone!
In these circumstances the most helpful thing to do is to reestablish as much of a feeling of safety as possible! Think about what makes you feel safe. Is it a place, a person, a thing, a memory… it can be anything! Either put yourself in contact with what makes you feel safe or visualize it while take deep breaths, inhaling for a count of 6 and exhaling loudly through your nose for a count of 8. Repeat this as much as you need until you feel calmer. Give yourself some grace and do not let anyone make you feel bad for having had a strong reaction to receiving what feels like frightening news about your health. It is ok to explain to others what the cumulative effect of repeated scary medical news feels like because the truth is, you cannot expect other people to understand without explanation. People are not mind readers. Sometimes they need a bit of education. It is always helpful as well to connect with others who do understand. Find a support group, a therapist who is experienced with autoimmune diseases, or connect with a foundation. It helps to talk it out in a supportive space.