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 of the past year and a 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 and 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 long time. In addition to the chronic migraines, she has rheumatoid arthritis and epilepsy. This breaks my heart as her mother, and I do everything I can do to be supportive. But, the one thing that 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 the seizure. Given that her office is more than thirty miles away from home, she cannot find alternate means of transportation. The toll that chronic illness takes on the individual is not for me to say. I can only write about what I have observed within my own family and what that has meant for me as a caretaker.
Many chronic illnesses are hidden, meaning that when you look at the person with the illness, you would not necessarily know that they are suffering. This makes it even harder for that person to be understood when they choose to talk about their pain. When others do not believe the person, they start to not tell anyone because it is just too hard to listen to their response. This becomes a vicious cycle of self-doubt and flagellation that can lead to severe depression, detachment from others, and anxiety over your illness. When you have an illness that strikes you unsuspectingly, as seizures and migraines do, the uncertainty about your 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 can observe how different medications prescribed impact their loved one. Many times I have observed subtle side effects that my daughter had not understood were part of the medication she was taking. The caretaker is the one setting 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 you have to be diligent about making sure that you are not doing too much for your child. With my daughter’s illness, she frequently is “out of it” as she says because the drugs she takes to numb the pain also cloud her thinking. This has made her dependence on us even more significant as we must observe her taking her medication which feels like a big but necessary intrusion. The next few weeks will be filled with many types of medical appointments as she recovers from the seizure and concussion. Physical therapy, massage, cognitive rehabilitation and a visit to the oral-facial pain clinic are all on the docket already.
Although it may sound extreme, when a chronic illness is so severe that it significantly alters your child’s options in life, it can almost feel like a death in the family. The hopes and dreams that you had for your child have been taken away and been replaced by questions about his or her future. However, you have to put away those feelings so that you can help your child face the realities with a positive viewpoint. That is not to say that you present with a Pollyannaish attitude, but you must be real with your adult child about both the negatives that have happened and the realistic hope for the future. Your adult child is also experiencing those 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 strongly, and when it is taken away without warning, it can be a disorienting and depressing event, except that it is not a one-time event, but a lifelong struggle. Acknowledging the loss with your child is a painful process, but there is no alternative. Until that loss is acknowledged, it is difficult to move forward because that old dream is always present. Learning to accept some limitations while embracing all that is still possible is the beginning of a new future.