Individuals suffering with Lyme disease often benefit from coping tools and tips to help with their recovery. Please find our best practices below as well as information that can be shared with loved ones to help them better understand how they can help provide support.

Being a caregiver or even a supportive loved one to anyone with a chronic illness can be challenging. Lyme disease can often cause symptoms in patients that change a lot of their relationships, and some manifestations of Lyme disease can be difficult for others to understand.

Some of these challenges consist of:

Emotional lability: Neurological tick borne illness can often cause depression, anxiety and mood swings in those who are sick, and some patients even report experiencing “Lyme rage,” which is feelings of extreme anger that they may have difficulty controlling. Sometimes these feelings and behaviors are due to the physiology of how Lyme impacts the brain; other patients become depressed, frustrated and angry over their circumstances of being chronically ill and often poorly understood.

Cognitive challenges: Neurological tick borne illness often results in inflammation of the brain, which sometimes results with challenges in memory loss, executive function, and time management. You may notice that your loved one with Lyme disease forgot to call you back, or maybe they are habitually late for important events. Because these patients may often appear healthy or even speak completely fluently, these cognitive deficits can be difficult to understand, and its easy to misperceive them as laziness, apathy, or other attributes that simply aren’t true.

Fatigue: Many Lyme patients suffer from persistent and often unbearable fatigue which makes living the life they once knew extremely difficult. Because Lyme disease is an invisible illness, it can be difficult to grasp how truly sick some Lyme suffers are, and it can be all too easy to take things personal when plans are cancelled last minute, or when your loved one can no longer engage in the same activities they once used to. In the age of social media, you may even see some patients post about a social event they went to the day before they were too sick to spend time with you- you may wonder, “what’s up with that?” While its reasonable to expect that because a patient is able to do a,b,c one day, they should have enough energy for x,y,z the next, this is simply not the case for most Lyme sufferers. Many patients often have limited energy reserves and they have to carefully partition their time for what is most important to them. Many times, patients have to spend days in bed recovering from social events that most people don’t think twice about. We recommend reading The Spoon Theory to understand what its like to have such limited energy reserves, and to constantly have to plan accordingly.

Financial stress: For spouses and parents of those with neurological or late stage Lyme disease, the financial toll it takes to treat the disease can be extremely overwhelming. Many Lyme specialists do not accept insurance, and many states still do not cover preferred treatments for late stage disease. Even when these expenses are covered, Lyme patients are often unable to work and contribute to income, and other costs of care can add up quickly.

 

Uncertainties of treatment: Due to lack of research for tick borne illness, there is a lot of controversy regarding which treatments will help or cure someone who is sick with Lyme disease or other tick borne illnesses. You may see your loved one with Lyme disease try treatment after treatment, only to become more ill with each new protocol (this is often due to a herxheimer reaction), or you may hear them talk about restrictive diets or alternative medicine treatments that seem far-fetched. It can be difficult to see your loved one suffer each time they try something new, and troubling when they haven’t made progress despite their efforts and money spent. This can lead to temptation to recommend other doctors or other treatments, and it may even cause you to second guess your loved one’s illness in the first place (“Do they REALLY have Lyme disease?). We recommend this document that might help you understand the challenges behind finding the “right” treatment for Lyme disease. Attending local support groups might also help you understand some of the rationale behind certain treatments and how they have helped fellow Lyme sufferers.

 

Rumination of having Lyme disease: You may find that your loved one with Lyme disease doesn’t have much to say anymore; in fact, it may seem like the only thing they can talk about is Lyme disease and what treatment they are currently taking. Social media posts might be overridden with post after post about Lyme disease, whereas before it consisted of pictures of adventures, pets, etc. It may seem like your loved one is trying to gain sympathy or attention for their illness, or perhaps that they have entered a sinkhole of Lyme disease that they desperately need to be pulled out of. But you know that if you say anything about this, they might become overly defensive. Although patients with Lyme disease may talk and post more about their illness than those with other diseases, there are good reasons for this, described here.

 

Ups and Downs of Tick Borne Illness: Lyme disease and co-infections are not like other illnesses where treatment provides stability or even manageability. In fact, effective treatment for borrelia infections actually cause patients to feel more sick as they are healing. Some patients, even those who aren’t in treatment, find that their symptoms vary from week to week, day to day, or even minute to minute. The recovery process from tick borne illness can mimic cancer in that sense, thought the diseases are still very different. We encourage you to remember that as frustrating it is for you to notice all the ups and downs and unpredictability of the illness, it can be even more frustrating for the person suffering from Lyme disease.

 

WHAT CAN I DO WHEN MY LOVED ONE IS SICK WITH LYME DISEASE?

First, know you are not alone. There are support groups for caregivers and typically loved ones are welcome at support groups- people with Lyme disease generally love to see when those who aren’t sick want to learn more and be more supportive. Secondly, acknowledge that having a loved one who is sick is a difficult and often times draining experience. The Lyme Tree emphasizes the importance of self-care for caretakers, and it might even be helpful for caregivers to find their own Lyme Literate therapist.

 

Second, acknowledge that having a loved one who is sick is very difficult- not just to the person who is sick, but to their friends, spouses, parents, colleagues, and more. We remind loved ones of those with Lyme disease that there is often a grieving process involved with chronic illness, and it is important to allow oneself to grieve all losses involved- finance, the person they once knew, changed relationships, and of course, health. It is important to allow for the space to grieve and to cry, and to not avoid these emotions or your friend who might bring these emotions upon you. It might be helpful to talk to another caregiver or someone else who is coping with similar losses.

 

Here are some other tips for those who have loved ones with Lyme disease:

 

GENERAL TIPS FOR LOVED ONES OF THOSE WITH CHRONIC ILLNESS/ LYME DISEASE

What it means to “hold space” for people, plus eight tips on how to do it well. 

How to be an ally to someone with an invisible illness 

5 steps to advocate for yourself or another with a chronic disease

So your friend has a chronic illness…

15 things not to say to someone with a chronic or invisible illness 

What we wish our loved ones knew about our chronic illness

FOR PARENTS OF THOSE WITH TICK BORNE ILLNESS

When Your Child has Lyme Disease: A Parent’s Survival Guide

3 Things to watch for: summer flu, school phobia, abdominal migraines

FOR HUSBANDS OF THOSE WITH CHRONIC ILLNESS

Better husband in sickness and in health 

 

 

 

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