I have recently returned from a 5 day trip to Chicago with my 27 year-old daughter. You might think, “Wow, that’s cool that they were able to vacation together,” but this was no vacation. My daughter has had a migraine headache more days, during the past year and half, than not. It has interfered with her ability to work, maintain friendships or live any semblance of the normal life that a vital 27 year-old woman should be living. We were in Chicago for a stay at the Diamond Headache Clinic where she was on an IV drop line of powerful medication for four days. She also received physical therapy, biofeedback and learned a lot about how her muscular tension contributes to her headaches. She left the clinic with only a very mild headache and a bucketful of hope. I have not seen her that hopeful in a few years. In addition to the chronic migraines, she has both rheumatoid arthritis and epilepsy. My mother’s heart is broken and I do everything I can do be supportive. The one thing I cannot do is make the chronic pain and illnesses go away, and that is incredibly frustrating for me.
Five days after we returned from Chicago, she experienced a grand mal seizure that busted up her beautiful face and gave her a significant concussion. She is still recovering from this event as I write. Today, we visit her office where she must resign because she will not be allowed to drive for six months as a result of this seizure. Given that her office is 30+ miles away from home, she cannot find alternate transportation. I write about the toll chronic illness takes on individuals because I have observed it within my own family and I know what that has meant for me as a caretaker.
Many chronic illnesses are hidden and when we look at the person with the illness, we would not necessarily know that they are suffering. This makes it even harder for the person who’s suffering to be understood when they choose to talk about their pain. When others do not believe the sufferer, they learn not to talk about their illness because it is just too hard to weather other’s responses. This vicious cycle of self-doubt and flagellation often leads to severe depression, detachment from others and additional anxiety over the illness. When one has an illness that strikes unsuspectingly, as seizures and migraines do, uncertainty about future is magnified and anxiety takes over.
For caretakers, there is a delicate balance to walk when providing support. On the one hand, the caretaker is the person who can objectively observe what is happening from the outside. The caretaker observes how different medications prescribed impact their loved one. Many times, I have observed subtle side effects my daughter had not understood were part of the medication she was taking. The caretaker sets aside their own needs in order to care for the person with the illness. On the other hand, the caretaker has to balance the other person’s need for autonomy. This can get very complicated, especially when the other adult is your child. Slipping into old roles and routines happens easily, and caretakers have to be diligent about making sure that they are not doing too much for their child.
During the course of my daughter’s illness, she is frequently “out of it” as she says because the drugs she takes to numb her pain also cloud her thinking. This has made her dependence on her family even more significant as we must observe her taking her medication which feels like a big, although necessary intrusion. The next few weeks will be filled with many types of medical appointments as she recovers from this latest seizure and concussion. Physical therapy, massage, and a visit to the oral facial pain clinic are on the docket already.
Although it may sound extreme, when a chronic illness is so severe it significantly alters your child’s options in life, it can almost feel like a death in the family. The hopes and dreams that a parent had for their child seem to be taken away and replaced by questions about his or her future. I have found that I have to put away those feelings so that I can help my child face the realities with a positive outlook. That is not to say that one presents with a Pollyannaish attitude, but we must be real with our adult children about both the negatives that have happened and the realistic hope for the future.
Adult children with chronic illnesses are also experiencing these emotions, but on an even more acute level. The lack of autonomy that a chronic illness brings is one of the symptoms that many do not understand. We each value our autonomy and when it is taken away without warning it is a disorienting and depressing event. Sufferers of chronic illness do not just experience a one-time event, but a lifelong struggle. Acknowledging loss with your child is a painful process, but there is no alternative. Until loss is acknowledged, it is difficult to move forward because the former dream of what could have been is always present. Learning to accept some limitations while embracing all that is still possible is the beginning of a new future.