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

    • GL

      SJ, my 21 yr old daughter needs to talk with people like you, because she is the younger, and adopted sister to my 36 yr old bio daughter , who has had multiple chronic illnesses for years, migraines being one of the first ones she faced, and now has several more, plus a few mental health issues, ADHD as a child and adult, and some not yet diagnosed ones that I feel convinced she has. They were bonded early on in spite of the age difference, but their relationship has been troubled when little sister was around puberty. Then recent events have damaged their relationship further because older sister had post surgery complications that ended up with her ICU and almost 6 weeks in the hospital. As a single mom, I am the primary caregiver because my older daughter needs a lot of assistance and their relationship is torn apart worse than ever. My bio daughter does have a father who lives far away and their relationship is difficult but he showed up after 9 days in the hospital and caused problems for me, his ex-wife of 20 + years and between her younger sister who is not his child at all, and cause issues between me and my adult son, brother to both daughter’s, and the whole small family we have is not good. I’m in the middle but so is my adopted daughter and I feel torn between all of it. My 21 year old is engaged so he is understanding but she needs other siblings of ill siblings to chat with.

  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.

  9. Diane

    Hi, I am the mother of a 39 year old woman who has had chronic, debilitating migraines since age 5. She has had many treatments. I am 73 and currently living with her and her 2 children. For the first time She has a job as an art teacher at a school. She has already been out 4 days. I find myself doing so much for her and her children. Driving kids to school 2 hours a day, cooking, etc. and trying to work part time. I need to work financially. I feel like I will never have a life of my own and sometimes feel resentful. It’s not easy living with your adult child, regardless of the circumstances. Her stress affects me immensely. I love her, so do all I can

  10. Mary M

    Hi Thank you for this article. I have a son who’s had undiagnosed pain issues started at 17 and he is now 24. My husband has fallen into a deep depression as he fears my son will never support himself — besides all his sadness about our dear son’s health issues and life struggles. I think we need support groups for parents of adult children with chronic illness. We struggle with a unique set of issues. The medical profession has not helped these children either. They are incredibly brave to live with such pain and fatigue. And none of us are able to live the lives we thought we would either. I wish all of you and your children all the best.

    • Nan B

      I am in a similar situation. It is so difficult to navigate a future as it really revolves around my 27 year old daughters health. I worry all day every day about her future and when my husband and I are gone. The system seems rigged when it comes to an actual support system for them as well especially with rising prices. She was devastated as well to find out that although she has “hidden” disabilities and is a loving person can never be married or will lose her DBL. If anyone finds or starts a support group please keep me in mind?

  11. AJ

    Mary M, you’re so right – we do need support groups! I found this page while online searching for exactly that, sitting next to my 19-year-old’s hospital bed. I’ve found resources for parents of chronically ill kids and for chronically ill young adults themselves, but I can’t seem to find anything for those of us with one foot in both worlds. 5 years into this journey, I’m realizing that nobody in my life “gets it” and I need to talk to some people who do.

    • Elissa

      I see that your posts was a couple months ago. I hope your son is staying strong, and that you are too. My son is 20, and he was just diagnosed with a spinal cord injury. He can walk, with effort, but a massive spinal surgery is required to prevent more loss of function (many functions.) It is so strange to simultaneously grieve, fear, hope. We know his life will never be the same, and yet we have to hope that there will be good days ahead for him. Even more good days than bad would feel like a win. Hang in there, AJ. You’re not alone in this pain of being the parent of an adult “sick kid,” and I’ll keep both of you in my thoughts.

  12. Agatha

    I also have come across this post looking for support and ideas of how to ride the rollercoaster of chronic illness – Mary M you are so right about need of support group – there are some resources for sufferers of chronic illness but very little available for carers of sufferers, and specifically parents of adult children sufferers. There are lots of places to go with grief of bereavement but almost nowhere with grief of ‘other’ losses. I believe it can be termed complex grief. You were spot on AJ – nobody gets it – well meaning friends might say I hope you are feeling better now! (I’m not expecting to ever feel better – just some days a bit better than others). And Elissa – you have articulated for me that difficult 3-armed balance of fear, hope, grief. Somebody has mentioned to me a book called Chronic Sorrow by Susan Roos – I cannot recommend as I have not read yet – but there is a dearth of information and support for this circumstance – and I lack energy to do anything about that. How could we communicate to advance this need that exists.

    • Andrea

      Nicki, can you email those of us who have responded and share a safe on line space, private Facebook group?, for us to meet in?

  13. Melissa

    As with everyone else who has commented, I found this article while searching for a support group. There is clearly a need. Can you help us in creating an online group? Is there a way for us all to connect? I know we all share certain life experiences and the emotions that come with them and I would love if we could help each other lighten the load. I am in Utah and would be grateful for help. Thank you for addressing this issue in such a relatable way. All the best to you.

    • Nicki Faircloth

      Hi Melissa –
      Our co-directors hear you and we will discuss ways to facilitate something like a support group or space to gather and communicate! Will be in touch. Thank you for your feedback.
      – Nicki

      • Andrea

        Nicki, can you email those of us who have responded and share a safe on line space, private Facebook group?, for us to meet in?

      • Joan

        I too am a parent of a 33 year old with chronic illnesses still living at home and I’m at my wits end. Can I join this group

      • Rebecca

        I know I am late to the conversation, but I too have a daughter who has just been diagnosed with a serious illness at 20 and am desperate for information and support. Thank you for your consideration.

    • Allison

      Hi Melissa,
      I don’t know if this will reach you but I wanted to try! We “met” on the caregiver listening session last night – I’m the mom from California with the 20-year-old daughter who is so similar to your son. Would love to connect. My email is allisonjoseph76@gmail.com.

  14. Andrea

    Melissa, I haven’t searched for support groups for parents of adult chronically ill children but if there is a need as it seems, can’t we just start our own thing?

  15. Jane

    I found this group today while searching for support, also. I am the mother of two adult daughters with multiple autoimmune and other diagnosis which can be life threatening. I feel what others have shared in these posts. Grief, exhaustion, and worry while trying to stay positive. A difficult balance. On top of that, my one daughter can only work on a very limited basis but keeps getting turned down for SS disability which adds financial stress. She has hospital based infusions through a port 5 days a month. With the chronic pain, fatigue, Lupus flares, immune compromised system, and depression.I’d be interested in the support and sharing of this group. Im a positive person but finding my daughter’s chronic illnesses are taking a toll on me.

  16. Carla

    I have RSD/ CRPS and I wish my parents would understand me and support. On the contrary they think I make this up. My mother even called me “a baby”. I have clinical depression and suicidal tendencies because of the pain, the lack of support and the constant criticism of my parents especially my mother. My whole life I thought I had the best mother. But when I got I’ll that’s when I realized she was not the kind of mother I thought I had. I asked her to go to teraphy so that they can guide her in how to support me. She said she’s not going to any teraphy. It’s sad. And hurts a lot. If you are a parent of an adult children I advice you talk to them and support them bc the love and support from a mother especially Can really make a difference on the pain. Every time I get in an argument with my mother, which is almost every week my pain goes up. I was living alone in another state for 5 months getting therapy and during this 5 months my health improved a lot. The minute I came back home my pain, anxiety and depression got so bad. I didn’t understand why. I was in treatment for 5 months I should have got better not worse. After doing EMDR I found out my own mother was a trigger for my flare ups. I’m looking to move away bc she is toxic aside from not being supportive

  17. Diane

    My son started having chronic pain at age 11. He had emergency brain surgery for brain tumor at 17. The issues caused by the brain tumor seemed to add on to the chronic pain, which remains in diagnosed today, he is 28. His mental health issues and illness prevent him from working or finishing school. He barely speaks to me even though he lives here and when he does speak he is hurtful to me. I don’t know what to do. We need a real support group – with a dedicated board and zoom chats. How do we do that???

  18. Kristin

    I definitely would like to be a part of a support group. My daughter is 25, soon to be 26 and off our insurance:(.
    I’ve looked for support groups for mothers of adult children but couldn’t find any.

  19. Kristin

    This article hit my heart. My daughter I had Gastroparesis, Ehlors Danlos Syndrome, POTS, and possibly MALS. She has not been doing very well lately and it’s so hard to encourage her when I need encouragement myself. I hate that she’s so sick and I’m so much pain. How do you answer the why me’s and the it’s not fair and the will I ever get to live a normal life like my friends?? I almost lost her about a month ago due to her potassium bottoming out.

    • Belinda

      I would like to hear more about your situation. I have a daughter who is now 34 and at home. She has been to many doctors and really isn’t getting much help of any kind. I want to be supportive but I also want to set boundaries but I honestly don’t know how to set them due to the struggles she has. She has been diagnosed with gastroparesis, and the neurologist said most likely she had the Ehlors Danlos Syndrome but it costs a lot to actually go to someone who treats that specifically that they were saying you can treat it without getting the actual test? However with her bowel issues etc she can’t seem to have any kind of schedule …she hasn’t worked for several years now. She had to have a total hysterectomy at 30 due to endometriosis and I believe depression etc all adds to the situation. Her siblings say I enable her and her father doesn’t help as I think he just believes maybe she needs to just suck it up and deal with life and i on the other hand see some of what she deals with and understand I would have a hard time dealing with her daily struggles. A support group would be so beneficial and I would definitely like to be a part of it. I’m at a loss as to what to do and the drs just have us going from one to another and no one is actually doing much to help.

  20. SJ

    I have been looking for some kind of support as a parent of an adult child with chronic illness. My daughter is 29, lives with us and has not been able to work for the past 2 years. Weekly infusions along with constant pain and multiple doctor appointments make it difficult for her to be able to hold down any kind of steady job. My husband and I financially support her and try to help in any way we can but it is just heart breaking to see all that she has to deal with. Please let me know if there is a support group I can join. It would be so helpful to talk to other parents who understand what we go through.

  21. Teresa

    PleasePleasePlease add me to the list of parents who found this page in a search for support groups! My daughter is 23 with chronic pain and this is hell!

    • Nicki Faircloth

      We would love for you to join us for our next session, next week via ZOOM.
      November 11, 6:00 pm – 8:00 pm ET

      Our next session will be for folks with chronic illness. With a special breakout room for folks who are caretakers of those with chronic illness. All are welcome no matter your location or gender.

      If you email this link, you’ll get an automatic reply with the Zoom link:

  22. Annie

    I am a therapist working with a woman in her thirties with some possible/probable long-term health issues due to a benign brain tumor. This woman is doing her best to live independently with the help and support of her aging parents. As her mother recently stated to me, “It can be a slippery slope knowing when to help, and when to pull back.”
    I am learning it is often difficult for parents to know whether they’re helping their adult child or enabling them. I am also learning it is difficult for the adult child, as she often needs and appreciates this support/help, but also wants/needs to be seen as a capable, intelligent individual with a voice that matters. Please let me know if a support group/website becomes available as this would be such a great support for these parents.

    • Gale

      Hello Annie,
      My 45 yr old daughter has suffered since 10yrs old with Lupus and a myriad of diagnosed illnesses as well as pain daily. She is waiting to hear the newest in 2 weeks which could be MS or MD. How do I react when she tells me the results…I feel I am always saying “I’m so sorry” when she tells me of each new issue. I want to say the right thing to her, be supportive but sympathetic at the same time. To give her hope and not total devastation as she will be feeling with either of the newest possibilities which are life threatening. I want to show her strength while inside I am devastated. We lost our only other child 3 yrs ago suddenly and I cannot bear the thought of losing her also. How does a mother comfort her adult daughter at the time of diagnosis?

      • Allison

        Hi Gale, I just read your comment and wanted to reach out. I am in the same boat – awaiting a bone marrow biopsy for my 20-year-old daughter that will tell us if her disease type is merely awful (heading for chemo and potential bone marrow transplant) or truly horrifying (extremely limited life expectancy). I have no wisdom to offer, just a hand to hold.

        I called in to the support group yesterday and am SO glad that I did. I’d encourage you to join next week for the caregiver breakout session, if you’re able. Nicki has posted the email link below.

  23. Mari

    Hello All. Mother of. 24 year old with chronic Illness that has consumed our family. Has a group been started? I see many comments asking about this

    I am exhausted and constantly worried about my son. His condition has worsened and he thinks about ending his life. It terrifies me. Many people do not understand as he ‘looks well’. I would so appreciate connecting with others to discuss coping strategies for the caretakers.

    Thank you! Mari

  24. CS

    Hi–I am the mom of a 32 year old daughter with Ehlers Danlos syndrome. She is in pain on a daily basis and it is so hard to watch….she has so many creative abilities, but is not able to work much anymore. My husband and I help her all the time, but it is tiring–both physically and emotionally. We worry about her being able to support and take care of herself as we get older. I really would like to be in a support group also…so many other parents have children with such minor issues…I feel that they can’t even relate to what we go through. Sometimes I talk with colleagues about what is going on with my daughter and I think they don’t even know what to say. It’s hard for them to relate!

    • denise

      Hi. I am the mom of a 30 year old daughter with eds and pots. I hear you and feel you. Would love a support group. Feel free to reach out to me and we can chat.

    • Wendy

      .I also have a 32 year old daughter with EDS–see my post below, if you are interested. I would love to talk with other parents trying to support and be care givers to their adult children, while working to enable them to have some sort of meaningful life and autonomy AND attempting to some happiness in their own life.

  25. denise

    can i send you a personal message? I am having a very difficult time navigating being a care giver to my 30-yo daughter who lives with me with a chornic illness.

  26. Nicki Faircloth

    We would love for you to join us for our next session, next week via ZOOM.
    November 11, 6:00 pm – 8:00 pm ET

    Our next session will be for folks with chronic illness. With a special breakout room for folks who are caretakers of those with chronic illness. All are welcome no matter your location or gender.

    If you email this link, you’ll get an automatic reply with the Zoom link:

    • Connie Jarowey

      Nicki – Are there any similar sessions planned in the future? Or has there been any substantive developments around forming an ongoing support group for all these folks? I am a clinician and mother of 30 y/o with life long medical conditions and pain. My story has already been stated in one form or another among these many comments, so no need to restate it. Just seeking interactions for both myself and, more importantly, my daughter who tends to slip into thinking that no one else suffers the horrors of invisible disabilities. Thank you for your time.

  27. Wendy

    Thank you for this post and these responses. I have a 32 year old daughter with Ehlors/Danlos syndrome. She has had too many surgeries to count, including 4 spine fusions. She lives with chronic pain that is often so severe she can not function. EDS effects every part of the body with connective tissue, which is most things and includes the digestive track. In addition to the full body pain, she has spent two 9 day stints in the hospital in the last month and a half just to get her bowels moving. She has trouble keeping food down and is of course depressed –some times severely so. She is on 40 different medications including opiods. As others have mentioned she can also be angry and combative (not physical,) . She rages at me and blames me when things go wrong. Sometimes I rage at her, too, as I have trouble separating my emotions from hers and keeping my own anxiety in check. And then I feel awful. She has a telecommuting job that she is likely to lose because of the work she has to miss for appts and hospital stays and because she has a very unsympathetic boss. Coming to grips with the fact that it is never going to get better, that I can not fix it and grieving the lost potential is difficult. Also as others have said, balancing care giving and allowing the autonomy a 32 year old should have and wants to have is difficult on several levels. It’s hard as a mother to let go, and my daughter pulls me in and pushes me away –wants me there, then tells me to back off. Often in the same sentence. It feels good to just write this.

  28. Elizabeth

    I have a beautiful 40 year old daughter that has a chronic illness. She has been in and out of the hospital so many times and each time they find another issue. She is in rhe medical field and works very hard going to work each day sick. Recently she was let go from her job because she had been in the hospital again. She lives by herself and I’ve reached out to help but she says she just needs to figure it, need space and it is hard not to want to give up. What do I do respecting her request yet so frightened?

  29. Joan

    I have a 40 yr old son, married, has 2 children, and a wife. He has an autoimmune condition which has slowly wreaked havoc on his body since he was 9 yrs. old. He is now going deaf because of his illness. His wife discovered she has a brain condition where she had to have a shunt put into her skull to drain fluid. She has chronic headaches and medication helps off and on. My son works which is a blessing but I too am at my wits end about both of their health issues and then the two grandchildren on top of it. I make myself available for babysitting and whatever else they might need. I try to supply it if I can. I am proud of both of them that somehow, they seem to make things work but am also extremely anxious about their future. I am constantly looking for support groups to maybe bring some relief to my mind and soul.

  30. Ellen

    Hi there. Just finding this now.

    If a Facebook group or some other group was formed could you please add me.

    I am the caregiver to our 25 year old daughter who has been chronically all thru high school and could not complete college. Has lived at home since 2018 primarily in her room due to extreme fatigue , pain , headaches etc.

    Would love the support of others who understand.


  31. Dev

    I am the mother of a chronically sick 37 year old daughter. She has five children and has been sick for two years. I am really struggling to refine our relationship. I want to love and support her without taking away her autonomy as an adult. I feel real grief at the loss of my beautiful daughter. I would love to join a support group for other parents struggling to help their child deal with a chronic illness.
    Thank you

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