Through My Lens

I often find myself wondering if people who do not live with a chronic illness are aware of how often those living with a chronic condition tend to blame themselves and feel shame for things that are really out of their control. It is my inclination to believe that most people do not think about the intensity and frequency of self-blame, guilt, and shame that people living with chronic illnesses may inflict on themselves. These experiences of blame, guilt, and shame can be quite emotionally painful and can oftentimes result in the person doing things that are not in his or her best interest in order to not feel painful feelings. Although others may see no objective reason for blame, the person living with a chronic illness may be seeing their own behaviors and needs through a very different phenomenological lens.

Here are some common thoughts people living with chronic conditions may have:
- It is my fault we can't afford a certain lifestyle because of all my medical expenses.
- It is my fault my loved ones are stressed out.
- I am a terrible friend for not being able to make my best friend's birthday party.
- I am a terrible friend for having to cancel plans last minute.
- I am failing my partner in so many ways.
- I am so stupid for not being able to remember those words or forgetting what I wanted to say mid sentence.
- I feel so guilty that I cannot gratify my partner sexually.
- I am so embarrassed that I can not stay awake past 9pm. What must people think?
- I am so ashamed that I have to wear this mask, brace, wig.... What must people think?
- I am so ashamed that I can't control my bowels. What must people think?
- It is my fault my child is acting out. I cannot keep up with her/him.
- I should be able to push through more. I am not trying hard enough.
- Everyone must be so sick of hearing about my limitations and special needs.
Etc...

When living with a chronic illness, one of the most common experiences of self-blame, guilt, and shame is that of feeling like a burden on family and friends. Being a supportive and loving family member or friend of a person living with a chronic condition includes making sacrifices at times, having to change plans, and listening to difficult feelings, among other things. Regardless of how often loved ones state that they want to be supportive in any way needed, the person living with the illness is still likely to think a lot about how their condition is impacting all the people in their life. This self-blame, guilt, or shame is likely to be especially heightened when a family member or friend is unsupportive in some way and does indeed hold resentment for having to make sacrifices, which is also not uncommon.

Regardless of whether or not one's family or friends are supportive, it is easy to lose sight of the reality that a person living with an illness does not want to be sick, does not want to have to make numerous adjustments to his or her own life, let alone want others to have to make changes for them. Yes people may have to make inconvenient sacrifices, but that is what relationships are all about and there are probably times that the person living with the illness made sacrifices for their loved ones.  Family and friends may have to go the extra mile, may feel stressed out, or may experience difficult feelings, but that does not have to be only an occasion for self-blame, guilt, or shame. Perhaps this can also serve as an opportunity for intimacy. It can be very easy to let these feelings keep you from letting others into your world. You don't have to be alone in your experience. People take pleasure in knowing that they can give and be present for those that they love. It can create a sense of closeness and connection. It can make loved ones feel like they have something to offer the person living with the illness, when they otherwise may feel completely helpless in the situation.

This is easier said than done. And perhaps this is out of the question if one's family members or friends are unsupportive and actually contribute to making someone feel like a burden. In this case it is probably a good idea to find another primary support group. Nevertheless, if one knows that his or her friends and family genuinely want to be supportive despite any accompanying hardships, then maybe this person can try and stay present with the love that his/her family and friends is wanting to give. Try and take it in. It may feel like they are giving you such a generous present, but in letting them be there for you, you actually may be giving them a gift as well. Perhaps, in that moment, the self-blame, guilt, and shame can be replaced with gratitude. And these feelings will likely ebb and flow, and the self-blame, guilt, and shame may re-emerge, but at least maybe there can be some moments of respite, connection, and gratitude.

If you find yourself or a loved one who has a chronic illness struggling with intense feelings of self-blame, guilt or shame, or if you or your loved one is shutting others out and not letting needs be known, it is probably the time to seek out help from a formal support group or a mental health professional. These experiences are very common and you do not have to be alone with them.