A mother and her daughter, both with chronic pain, share their conversation about it with the National Pain Report.
By Liza Zoellick.
There are a lot of young spoonies out there and many who feel a little lost and a little alone as they try to navigate this chronic world they are now in. My oldest daughter Sarah is among those 20-somethings recently diagnosed and trying to find her way in a world that isn’t very acknowledging or accommodating of chronic illness. I decided to interview her and share her perspective on being a chronic pain warrior.
She is 23 years old and has been diagnosed with Bi-polar Disorder, ADHD, and Tourette syndrome, possible Rheumatoid arthritis centered in feet, Fibromyalgia and Carpal and Cubital tunnel.
Me: We share a few diagnoses in that list. Do you ever feel that the medical community sees you and says: Yeah, you’re 21, you can’t have chronic illness?
Sarah: “Yeah, you can’t possibly have chronic illness. But I feel more like it’s an “oh…poor you…” sort of thing. Or as they say in Texas, “Bless your heart…” It’s not very authentic.
“Even going to the doctor is a hassle. Recently, when I went to the rheumatologist, an older lady asked me what I was doing there and if I was waiting for someone. I told her no, that I was waiting to see the doctor and she looked surprised. She asked how old I was, and I told her 23 and she told me I was way too young to have the problems I was having and just shook her head. I feel like people who are young and struggling with illness get treated differently because it’s almost like only older people have a license to get certain ailments. And even worse, if you don’t “look” sick or “act” sick, then, well, you can’t be sick, right? Sadly, I even worry about telling doctors everything I have been diagnosed with because there’s always a voice in your head whispering: “They’re not going to believe you. They’re just going to think you are making it up.” It’s hard, definitely.”
Me: “I totally get it. It doesn’t really change when you are 43 with chronic illness, but I can’t really imagine life at 23 and having chronic illness. Even though the doctor is pretty certain that I didn’t wake up in my early 40’s with all these issues, I wasn’t cognitively aware of it. Maybe not knowing, being ignorant, helps in some ways. I don’t know.”
Sarah: “I can’t say I have felt much differently than you about doctors. You were with me the day I went to the first pain management doctor and you were horrified at how she treated me. I think the community as a whole needs to change and be more willing to hear a patient and not shame them for diagnoses. Sometimes, other doctors make mistakes. Maybe the initial diagnosis was wrong, but I think you should be able to talk to a doctor about everything you have been diagnosed with without feeling like you are something between lab rat and hypochondriac.”
Me: “Do you ever worry you won’t be able to find a life partner who will understand your chronic illness and be willing to care for you or at least, understand you are not a normal 20 something?”
Sarah: “Yes, I do worry about that and I’ve resigned myself to the possibility that I won’t have one and I’m okay with that. I would rather be alone and be with family that understands and respects me rather than be with someone who feels…obligated…to have to take care of me because I have a lot of medical problems. I am not a normal 20 something…girl and its okay. I’m okay with that.”
Me: As mom…it breaks my heart to hear that. Not because I do not think you could be happy on your own, but because you feel like you will become a burden to someone else. I am proud of your spirit and your acceptance of who you are. I think right there, that is half the battle and love and a lifetime partner go beyond some of the things you are worried about. Your dad married me when I was healthy. I had a few little issues but nothing huge. Twenty years later I am not quite the same person, but we are still very much in love and there has never been a feeling of resentment or feeling of obligation to take care of me because I am his wife. I think keeping the door open, and knowing that you can find someone who won’t care and will love you and take care of you (if necessary) because you are awesome and worth it is what matters.
Do you ever feel left out from activities your peers engage in?
Sarah: “Oh yeah. I feel left out of activities a lot. Like dancing. Here in Texas, going to country bars is a popular thing and I used to love dancing, especially line dancing. It’s easy to memorize and doesn’t involve a partner. I used to be able to tolerate it for a night and put my feet up the next day and rest. Recently though, I have not wanted to dance because I hurt. Pain is a very persuasive deterrent. I hurt just standing more than 30 minutes at a time. But lately, I feel like a 5th wheel because I just sit around watching while everyone has fun. That whole fishbowl thing is not a lot of fun; besides, I have more fun being at home, watching my favorite movies and T.V. shows with my parents and sisters than I do going out any more. Most people my age hate being at home, especially at home with parents and they can’t understand why I would chose to be home rather than going out drinking or dancing or anything else people my age might do.”
Me: “I certainly don’t mind you being at home. Gives me a hell of a lot less to worry about, but since I was once your age I understand what it must be like to not be able to go out and do things with friends. I think there must be a lot frustration and maybe even a little sadness.
Do you feel stigmatized by others, including your own peers?”
Sarah: “I feel that people my own age don’t really understand what I am going through. I feel like they look at me and think “hypochondriac” or something. I get told that if I worked out more and ate better that I would feel better. I’ve also been told that maybe a new job would help.”
Me: “It has to be hard. I’ve talked a lot about forgiving your body for the betrayal of chronic illness. Trying to find the grace in a situation that makes you feel so alienated by everyone around you. I think most spoonies reading this understand how it feels to lose friends or not be able to hang out with them as much because you can’t.
Do you have worries about the future? Health, finance, life in general.”
Sarah: “Yes, I worry…I worry about a lot. I worry about finishing school, finding a job in the field that I have chosen and that I enjoy. I worry I won’t be able to work a 9-5 job much longer; the shift I work now already exhaust me more than longer shifts I worked in the past. I worry about insurance, doctor’s visits, affording doctor visits knowing that I’m going to be seeing a lot of them and probably for a long time. I worry about saving enough money to retire. I worry about not being able to enjoy my life because I am young and I have hopes and dreams like everyone else. I worry about you…because you have health issues and our issues are similar and I feel like I have a responsibility to take care of you as your eldest daughter. I worry a lot.”
Me: “It’s difficult listening to you, and I’m trying not to cry as I finish this interview. It hurts my heart to realize how much you worry. I see a vibrant 23-year-old with her whole life ahead of her that has suddenly been clouded over with this looming darkness of chronic illness. I wish you didn’t have to worry about all these things; I wish I could give you hugs and kisses and make everything magically go away and you feel better. However, I think if you approach life in small, bite sized pieces that we can handle everything that comes and make sure that you are in a good place so maybe; you will have less to worry about. As for me, and worrying about taking care of me, that is the part where Dad and I do the adulting and prepare for those inevitabilities of older age so we don’t burden our kids with the responsibility of our care. At least as much as we can.
How do you deal with work schedule and school? Do you have any tips for balancing the two?”
Sarah: “So I take all my classes online and I work a full-time job. I will be honest, while it has been hard I have managed to obtain my associates degree after a full 5 years of going to school. I just tell myself that it doesn’t matter how long it takes me to get my degree as I long as I get it. College isn’t for everyone and I think you have to find something you like that you can maintain a long-term drive to finish it because it may take a lot longer than someone who is in great health. Go for something that makes you happy and take into consideration what you might be able to do with it once you get your degree. My degree may allow me some flexibility and I may be able to work from home where I am more comfortable. Some tips I would offer: Don’t be afraid to talk to a counselor at the school and explain your situation. You might be able to qualify for some disability assistance and that could make the school experience easier for you. Also, don’t be afraid to take fewer classes if you can’t handle the course load. Slow and steady wins the race! Talk to your teachers, explain the situation and sometimes you will find that they are accommodating and will extend due dates to help you out or allow you to take tests at home.”
Me: “I couldn’t agree more with you. It’s great advice for young students facing chronic illness/pain. The only other thing I can think of is reaching out on student campus, and letting others out there know they are not alone. One of the great uses of social media is bringing people together who might not otherwise have known about one another and if you can build a support group on campus you surround yourself with people who understand you and can help you out too.”