On Being the Mother of an Adult Child with Chronic Illness


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.

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  1. Merle

    Thank you for sharing this. I have been looking for support and understanding about the struggles and feeling surrounding being a parent to a chronically ill adult child. You said it all so well There are days and weeks that I feel so despondent, helpless and angry. It really helps to feel part of a community that “gets it”.

  2. Gailya Paliga

    You explain this really well, Anna. Our daughter also has chronic migraines, and her life and my life are very different as a result. And people really don’t understand what it’s really like with this hidden illness that she also further hides from most. The migraines started when our daughter was 10, and she’s 22 now. We’ve tried so many treatments.

  3. Susan

    Thanks for sharing your story. I am the mother of a 33 year old daughter who has been suffering from what is thought to be New Daily Persistent Headache for four months. We have experienced a roller coaster of emotions as her journey through medical testing and search for successful pain relief continues. She has had to stop teaching after being in a classroom for nine years. I find it very helpful to learn of how other parents deal with the challenges of watching a child’s suffering. Thanks and wishes for your loved ones to get well.

  4. Diana

    My grown son lives across the country and has multiple autoimmune conditions. I just found out the severity of them, and I’m beside myself. I’ll do anything to help him, including moving to where he is. It’s such an awful, scary, helpless feeling.

  5. Sj

    Thank for for this post. I am an adult sibling of an Ill adult sibling where our mother shares the role of caretaker. It’s the most disturbing experience especially when a mom is trying to stretch herself between her two kids because she looks at dealing with the situations as her duty

  6. Robin Benz

    The most touching part of what you wrote was about witnessing how the medications affect your child without them even realizing it. It’s becoming more and more difficult for me to deal with my young adult son who has kidney failure and is now suffering seizure as well. I wonder how parents who have an adult child who’s combative is combative on top of everything else common deal with this pressure. I am really at my wits end and trying hard to hang in there myself because whenever he is doing OK he tends to be a bit combative in terms of taking his treatments And proper dieting. So when something drastic happens to him it’s all the more frustratingSo when something drastic happens to him it’s all the more frustrating

  7. Penny Homan-Muise

    Thank you for sharing! The life of parenting an adult child in chronic pain who does not follow the typical life development path is exhausting and hella difficult. My adult child (chronic pain started at 11 years old) took 6 years to complete college managing daily pain with commonly associated anxiety and depression. It is an undesired guest in our home. How will they become financially independent? How will they find a job that is flexible enough? They have been out of college for over a year and still cannot manage work for more than a few hours at a time. There are so many negative influences of a child growing up and continuing to live as an adult with debilitating chronic pain. It is a vicious cycle of patience, acceptance, anger, sadness, and fear. Society is not tolerant as the external physical self looks “just fine”. It is a tough ride and there are few parents who seem to understand.

  8. Shelly F Banet

    I too have an adult child, now 23 yrs. old, who has had chronic pain since age 11. The mental health aspect of the ongoing pain has multiplied as well. My daughter has graduated from college (just in June) and is living with my ex’s parents as they do not have upstairs bedrooms, thus no stairs to climb in which are too difficult for her due to the pain. She cannot work but a few hours at a time either, so is not even pursuing a job at this time. It breaks my heart and I grieve . Knowing that there are other parents in this situation is helpful, in that I don’t feel alone now in this process of loving and caring for her – without her knowing the sadness I feel.

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