When Family and Friends Do Not Accept Your Illness
"Chronic illness will show you two things very clearly: the amazing compassion of some people you hardly know at all, and the disgusting selfishness of some people you thought you knew very well." – Patrick Plum.
When you are diagnosed with a chronic illness, life changes, you learn to adapt your schedule around doctor's appointments, chronic fatigue, and pain. You will find that you have to adjust your outlook on life, priorities, and goals to your new reality. But one of the most painful changes that lupus brings to our lives isn't a physical struggle or even a mental one. It's the change in our relationships with other people when they refuse to accept our disease.
Lupus, the invisible illness
Lupus is an invisible illness. Even when our pain and fatigue are at their worst, other people rarely see how awful we feel. This can lead to family members, friends, spouses, and colleagues doubting us when we are sick. When you live with lupus, you might hear comments like:
"You don't look sick."
"We all get tired sometimes."
"I wish I got to stay in bed all day instead of work."
Lack of empathy for lupus
Being on the receiving end of this lack of empathy is incredibly painful, especially when coming from people close to us. The rejection we experience from having our pain mocked or dismissed can leave scars on our hearts that linger for years.
Sometimes, a family member or friend’s refusal to accept our illness can take the form of verbal abuse. If a family member puts you in a situation that exacerbates your illness or if they prevent you from accessing the medical care you need, they are abusing you. Abuse might also take the form of gaslighting or trying to convince you that your disease is all in your head or not as serious as it actually is.
It is not your fault
It's important to know that abuse is not your fault and that you did nothing to deserve it. Abuse is always the fault of the abuser. They may be abusing you because it’s difficult for them to accept that you are sick and that your relationship has changed or because your illness reminds them of their own mortality and vulnerability. While change is hard for many people, it does not give anyone the right to treat you poorly.
As someone who has lived with lupus for 12 years, I can tell you that lupus doesn't cause relationships to fail. It only shines a spotlight on already unhealthy relationship dynamics. Few experiences are more painful than loving relationships with people you thought would be there for you when you needed them most.
If you are experiencing abuse, try to distance yourself from the abuser. In addition, seek out a licensed counselor to help you heal and recover. Lastly, remember that your pain is real. Your experience with your disease is real, and no one has the right to tell you otherwise or mistreat you because you’re not able to do what you once were able to do physically.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?