TOUCHED BY LYME: When Lyme hits people in their twenties
How do college students and other young adults cope with Lyme at this transitional time of their lives, when they would hope to be finishing school, starting work, and forming new relationships?
A young woman named Megan recently raised a compelling topic on one of the Lyme discussion groups: how do college students and other young adults cope with this disease when they are supposed to be getting on with their lives? She gave me permission to share her post with you here.
A bit of background: Megan is 23 and may have had Lyme her entire life, but symptoms didn’t hit with a vengeance until college. Misdiagnosis and improper medical treatment added to her difficulties, as she struggled with her health throughout college. She was finally diagnosed with Lyme near the end of her senior year, managed to graduate and is now under treatment for Lyme disease. Here are her words:
I guess I’m just curious if anyone out there falls into the 20-25 range? It’s strange having this new illness to deal with at the same time as being at the point in my life where I am suppose to be moving forward and having this great transition from school into independence and the working world, only I have barely any energy to do what I should be doing and most of the “transition” part of my life is on hold for now until I start feeling better.
If there is anyone else at a similar point in their lives (either college or within a year or so after), I’d be curious to know how you are grappling with these challenges i.e. what kind of work you are able to handle in order to earn some money, what helps you concentrate on schoolwork when you feel foggy-headed, etc.
Sometimes it seems a challenge even to have the energy to get dressed in the morning so I can do a few simple tasks like running errands or finding out about grad school programs in the area. Other days are a little better and I feel like I can handle a little more, but unfortunately I have only been in treatment for a little over a month (Bicillin injections once a week)and the days of feeling clear-headed with any energy are still pretty sparse and I don’t feel much effect from the treatment yet.
Any insight from anyone else dealing with anything similar would be very helpful if only just to know how other people dealing with similar issues are grappling with them and any tips you might have.
Megan’s posting elicited a flurry of comments. Among them:
The best advice I can give you at this time is keep as many of your old friends as you can and try to make new ones. Because we don’t have the opportunities to get out and live life like other people our age it’s really easy to become isolated fast.
Many people recommended attending Lyme support groups (though availability depends on where you live). And joining on-line groups for your own interests and hobbies. One person offered a more innovative spin:
Try craigslist.com ‘activity partners’, activities can be anything from short walks, to shopping together or listening to music or reading books outloud, playing board games or computer games, cooking together, etc…
Someone also suggested starting an on-line chat group for young adults with Lyme.
Any other ideas out there? Please feel free to use the comment section at the bottom of this blog page, or, if you prefer, email them to me at dleland@lymedisease.org.
This is a topic that merits further discussion.
I think it would be a good idea to have a chatsite for this age bracket.
Since young people are being hit by these diseases, maybe to think about future plans based on this illness experience, like consider becoming a health counselor, or maybe plan to go on a vector control board to help get signage going, etc.
In other words, to think about how to help society deal with what's going on.
I think of it as three-pronged: people, pets and environment. So what could be done for any of it.
And to do so in modified fashion, to match the degree of functioning that someone has.
Example: include phone conferencing for meetings if people are not well enough to attend but could do so from home.
Someone asked me to post this response for her:
My daughter is a freshman this year at Indiana University . Because of her Lyme she was not sure she’d be able to move away to college and live on her own, but it was her wish to try, so we went through the applications during her junior year. None of the 4 colleges where she was accepted was over 2 ½ hours away. We found a lady who treated my two kids with natural products, no antibiotics starting this last May, 2009. By mid July, my daughter had given up her 4 hour daily chronic fatigue naps and had started running again to build up some stamina for walking on a big campus. But I kept waiting for the central nervous system symptoms to appear as August came and the realization that she was moving to college hit her. It never happened. She had to become homebound at the end of her senior year, and missed on average 45 days out of the required 180 each year. Not to bore you with all of her symptoms, but I wanted you to know that she was suffering terribly and getting worse. The main ones that were the most troublesome for attending class were nausea, dry heaves, head pressure, light sensitivity, stomach issues, fatigue, tremors, and cognitive issues (memory, speech, math skills, comprehension had all declined). As her health improved, so did her mental ability and stamina. Below, I will discuss how we got help through high school, college, insurance issues, and getting help.
In high school, I found I had to pursue help. It wasn’t immediately offered that my two kids with Lyme could get a Chronic Illness form so they could miss more than the normal days during each school year. In middle school it’s not as important, but the state takes a hard line once in high school as grades are kept and graduation requirements are enforced. Then the state has a conditional form for teachers, the student, advisors, school officials, and parents to agree on accommodations that help the student get through school. Conditions include but are not limited to, coming late and leaving early without having to have the clinic’s permission to leave, who tended to always want a fever present to let them leave, based solely on the student’s assessment of how they feel, and not being bound by homework assignment dates (no late assignment penalties). Even if there is a project due date the student is excused if they have been absent, (because my kids would feel better toward the end of the day, but too late to complete all homework, and then miss the whole next day because they didn’t have one assignment completed and didn’t want to get a low grade). They can carry water, have unlimited access to the nurse and bathrooms (not limited to a certain number of passes). And finally, for only certain classes, certain timeframes, or wholly, they can become homebound, meeting teachers in the late afternoon or evening when they feel better. You, as a parent have to research what you can ask for, as I found the school did not offer services freely. Whatever it takes, help your kid get through Lyme, while seeking treatments that are effective. I also communicated frequently with her teachers so they understood the situation. They just get a form stating that the kids were chronically ill, but I found that an email telling them a little history and explanation helped them understand why my kids were so sick.
At college registration, I found a table that had info on disabilities help. I had been told by the Dept of Education of our state that no help was available for college. “The state was only required to help through high school.†Wrong!!! The Disabilities Dept was wonderful and even lists Lyme Disease on its information as a qualifying disability. Even if you don’t have a positive test for Lyme, (neither of my kids do), if you have a diagnosis of chronic fatigue, fibromyalgia, POTS, or anything like that, just tell them your child has symptoms similar to Lyme and they ‘get it’. They offer help by letting her choose classes early so she doesn’t have to have early morning classes (her worst time), she can leave a class if ill, if attendance is part of the grade for a class, she is excused from that, she can have transportation to and from class, she can have a car on campus as a freshman to come home for treatments or to get to class, and if she misses a class, there is a designated note taker from whom she can get caught up and copy notes. So far she hasn’t needed services, but she feels better knowing that is in place. It also helped to see others with disabilities like sight impairment, wheelchair students, learning disability students, and others who were able to work through disadvantages and not let those differences keep them from their dreams. Also, at registration, her housing was all in place, but she was very far from the main campus. I contacted the Housing Dept. and they changed her to a central location, in a single room, near a bathroom, with air conditioning. For both services, there was a simple form with minimal paperwork, just our physician’s approval and explanation. The single room is great for her. Her whole floor is single rooms, so very quiet. It also allows her to stay up late to study and take naps when she needs to. It was only about $1000 more per year and well worth it. She still sees friends elsewhere on campus, but has her quiet room to escape to.
Something else to consider is that if your dependent child is on your health insurance plan, if they stop being a full time student, the insurance company can drop them. Just be aware of it, and try to keep your child in school if at all possible.
Barometric pressure seems to affect Lyme patients enormously. I have two kids with it and definitely see patterns. Their homeopathic lady they see says that the pressure affects the inflammation caused by the Lyme, the same as an arthritic person feels a bad knee when it’s going to rain. Both when the barometric pressure goes up or down, getting bad or clearing up, they have bad days, so I’m not sure living in the Midwest going to school is the smartest thing. Of course you have to consider costs of going out of state, their area of interest and what’s offered where, how far they are comfortable going away from home, etc, but if you are on your own, choosing a grad school, it might make sense to go southwest where the weather is more temperate. Also, she warns to avoid the nightshade family of vegetables. She says that foods from the nightshade family tend to exacerbate any inflammatory conditions you might have. Tomatoes, potatoes, eggplant, green pepper, hot peppers and tobacco are included in the list to avoid. Avoiding gluten and sugar that the Lyme bacteria feed on seems to help also. You can’t cut out all of the above foods and still eat, but limit them and you will feel better and help take stress off of your system as it recovers.
Most importantly, find people who support you and tell you ‘you can’, instead of what you can’t do with Lyme. Never give up looking for what makes you better. Ultimately antibiotics and cortisone only seem to suppress Lyme, and I think the key to my daughter’s success was finding alternative medicine that helped her own body get back to where it needed to be to fight it off itself. Open your mind to the possibility of alternative medicine, which I know is a leap from how most of us were raised. I am not against western medicine, and we still see MDs for other medical concerns, but including it in healing has helped my kids immensely. My philosophy has been to research new things to see if there are drawbacks or risks, and then if there are none, they can’ t hurt! And ignore family members and friends who think it’s all in your head. Of course, all stress, good (parties, sports, social situations) and bad ( SAT exams, class exams, too much homework piled up, family problems, missed school), affects your central nervous system and can play havoc with your adrenal glands that release epinephrine (adrenaline), making your heart race and consequently giving you that instinctual panic attack that is there for times of actually escaping danger (from caveman days). It can also at times cause you to continually have a horrible sense of dread, like an impending disaster is coming. You are not going crazy and Lyme is beatable!!!! You cannot control how the Lyme affects your nerves, so yes, in a sense thinking about upcoming events can seem ‘mental’ and aggravate the Lyme, causing you to miss important milestones, but get on a good healing program, stick with it, and you will see that you will improve. Understanding why you feel worse some days helps in the recovery. And understanding that a lot of involuntary bodily functions are out of your control when you are so sick, so don’t beat yourself up for being sick… getting well is a long process of about 6-12 months. There is no quick fix pill to make you well immediately. Understanding this has helped my kids. Also, as you heal, allow down time to rest. If you’ve been ill for a long time, you will want to catch up socially for all that you have missed, but don’t over do it!
I will try to encourage my daughter to write about her side of the story, but she is so busy with classes and having a social life for the first time since middle school and I constantly remind her to balance it all. She just wants to be a normal student and doesn’t like to talk about her Lyme problems. So that is why I am giving my ‘mom’s perspective’ and hope it helps someone in high school, college, and grad school. She still has bad days with dry heaves, headaches, fatigue. With texting, free LD for family members, and Skype, she still has close contact with everyone at home including the dog that she misses more than us! I would advise parents not to burden your child with problems at home, as they have enough to worry about with college, and just be there to listen. Everyone keeps asking if I miss her, and I say no, because I am so relieved that she was able to live like a normal person for the first time in 7 years. She may relapse, and we will just see how this goes. We will do Plan B if we need to, but I’m glad it’s working our for now.
Good luck to all and never give up looking for a way to get better.
Another mom chimes in:
Our son was unable to attend Jr high and high school. The good news is that he is attending college this year. During the years that he was really sick he made friends on line and hooked up with them both in person and on the computer when he was having good days. he got involved in on line gaming among other things.
Find people on line that have your interests and stay positive. It took years and he remains on maintenance doses of antibiotics and has an abbreviated schedule. but is getting his life back and lives on campus. never look back, try to be positive and know that you will make progress. It takes time to get well and everyone is different, but you will find what works for you.
Willy~
I am a senior at IUPUI. I've had Lyme Disease through my whole college career and it has been really tough at times. Thankfully,I am doing much better after being on antibiotics, but there are still days when it's a struggle.
I'd love to connect with your daughter if she'd be interested. No one except a Lymie can understand exactly what you are going through.
Willy, Our daughter also suffers from Lyme Disease. She is struggling to complete her senior year of college. I would be interested in knowing what type of alternative medicine your daugher sought. Our daugher is currently on antibiotics and we are open to anything else that will promote healing.
I was recently diagnosed and I can completely relate. I am struggling to survive my last year in college. I have alway been a A/B student, but I just failed my first exam. I'm devastated. Please email me if you have any recommendations!! I could really use some help right now.
ramandarae@gmail.com