Supporting Someone with Lyme Disease

Lyme Disease affects each person individually, but there are some experiences that are common among most who suffer from Lyme Disease. If you have a friend or family member with Lyme Disease, THEY DESPERATELY NEED YOU! By doing your best to understand their plight, you can provide them with the love, validation, understanding and support they need to be successful in their treatment process. So first of all, thank you for taking the time to read this post! The very fact that you are interested enough to find out more (for them) makes you a rock star in my book.

I believe that to be able to fully support someone with Lyme Disease, it's essential that you educate yourself about the basics of the illness, what it is, what it does, how treatment works and how it's likely to affect your friend. Those specific things you need to KNOW are all topics we'll cover in Lyme Support 101. For today, I want to focus on some specific things you need to DO to support your friend or family member struggling with Lyme Disease.

1) Listen to them. When your friend is hurting and needing to share their massive burden with someone else, don't trivialize their monumental struggle by offering well-meant but ill-timed explanations about how they should try to think about other things, focus on the positive, or how they should be grateful they're not worse off. While it is extremely important to be positive, it doesn't help anyone to completely ignore serious, life-altering problems. Lyme Disease is life altering in every sense of the word, and throughout your friend's struggle they will experience every stage of the grieving process, and probably over and over, given the length of time that most people deal with this illness. Feeling constantly shut down in your efforts to communicate and share your heavy burdens with others is extremely isolating. So too, when you're dealing with something as physically, emotionally, financially and socially complex and draining as Lyme Disease.

2) Ask Questions. As you're listening to your friend's feelings of grief, sadness, anger, disappointment or fear, ask them about why they feel the way they do. What do you miss most about being healthy? What is most frustrating about your daily life right now? What is most difficult for you? What are you most fearful of? These types of questions show that you are not only hearing what your friend is trying to communicate, but they may also help your friend to feel understood, validated and supported. It also gives your friend an opportunity to verbalize heavy emotions that they may have been experiencing thus far alone. Sharing those difficult emotions with a trusted friend can sometimes go a long way to helping to lift them or at least, make them lighter. Don't be surprised or scared if there are some tears involved, here. Remember, people suffering from Lyme Disease have usually endured years of being told there's nothing wrong with them, all while experiencing an ever increasing decline in physical and mental ability. They have a very real disease that is not accepted by half of the medical community. They have endured isolation and even ridicule for a very long time, and have a great need to feel understood and validated, whether they recognize it or not.

3) Stay Present in Their Life. Call your friend, (realizing that they may not answer the phone much, depending on where they are with their illness) drop by, send a card or care package. Because Lyme Disease can be so incredibly isolating, your friend needs you now more than ever. Recognize that they are probably not in a place to reciprocate your efforts, but in true friendship you shouldn't be keeping score anyway. They need to know that you are in their corner. They are in the fight of their life and they need to feel your presence and strength. Even if you are not able to have frequent conversations with them, let your friend know that you are thinking, praying and pulling for them.

4) Remember They Are NOT Ignoring You. One of the saddest realizations for me, was how many "friends" completely dropped out of my life when I became so terribly ill with Lyme Disease. I was totally bed-bound 95% of the time; I was literally struggling to get through each day, with a totally changed diet, a medication schedule that entailed taking 84 pills spread out over 8 different times throughout the day, and feeling wayyy sicker than I had before I started treatment to get better. My social life was suddenly at the very bottom of my priority list. This is true of so many with Lyme Disease. And yet, as humans we are social creatures, designed in a such a way that most of us need and depend on regular, positive interaction and communication with family members and friends as a consistent part of our healthy lives. This applies even more when you're fighting a terrible illness -- except that many times a person fighting Lyme Disease has been so debilitated that they are simply trying -- literally and figuratively -- to put one foot in front of the other. Don't take it personally when they aren't as social, aren't as available as they used to be or seem to completely drop off the planet altogether. Make yourself available to THEM. This doesn't mean that your social life has to completely change because theirs has, but you could set aside a Friday night or Saturday afternoon every few weeks to check on your friend.

5) Adapt Activities to Their Needs. Your friend's life has been completely turned upside down by this illness. Help them keep some normalcy by adapting some activities to their new "normal." If your friend is too sick to go out with the girls, plan a girls night at home, where your friend can stay in bed, or at least rest on the couch, while still enjoying, and being strengthened by the fellowship of her friends. When I was very sick and on treatment, a wonderful friend came over and did my hair and makeup prior to taking me out for a few hours in a wheelchair. The idea of doing my hair and makeup seemed too physically exhausting for me at the time; but instead of just offering to take me out for the afternoon, (which I would have declined because of the effort of trying to be presentable) she was sensitive enough to ask if I would also like some help getting ready. Be sensitive to the fact that sometimes, they may be too sick to do much of anything. But other times, they still really need a social life, and they need to get out in the sunshine and breathe some fresh air. Get creative about how you can plan activities that can help your friend to remember and experience happiness and joy, even in the midst of so much difficulty.

6) Be Patient. Remember that your friend is fighting a serious bacterial infection that is wreaking havoc all over her body, including in her brain. Inflammation caused by the bacteria in her brain causes lapses in short-term memory, word recall and other forms of higher brain function. Be patient when your friend forgets your birthday party, or the lunch you had planned; Recognize that even when she remembers, she may not be able to be there because of the many physical ailments she's dealing with right now. Be patient when she does remember something you've got planned, but cancels at the last minute yet again. It's probably last minute because she was really hoping that this time, she would feel well enough to make it, and then realized at the last minute that there was just no way she could physically do it; Be patient when she talks slower than usual. Be patient when she ends her thought mid-sentence or can't seem to be able to find the words she needs to articulate her thought. Be patient if she doesn't seem to be as well-rounded as before; Try to remember that this illness she's dealing with is something that she deals with every second of every moment of every hour of every day. It can feel all-consuming, which can be annoying to those around her, particularly close family and friends; But remember that while it may be an annoyance to you during your brief conversations, this is the stark reality she is constantly faced with and cannot ever get away from. As a good & trusted friend, share it with her, and try to be patient.

7) Be Observant & Helpful. Your friend with Lyme Disease is struggling so much more than will be outwardly apparent or visible to the casual observer. When your life has been up-ended by Lyme Disease its like adding insult to injury that you can sometimes no longer do even the simplest of daily tasks, like running errands, cooking, cleaning, grocery shopping or organizing your home or life. If your friend is like most people, they will have a difficult time asking for help. Look for ways that you can help where there's an obvious need and then be direct. Don't leave the burden on your friend by saying "Let me know if I can do anything." Ask direct questions. Does your friend need any prescriptions picked up from the pharmacy? Would she like the living room vacuumed? The dishes done? That pile of laundry washed and folded? Are her kids taken care of? Does she need help re-filling all those medication trays or scheduling her next dr. appointment? Has she got a ride to her next appointment? Hopefully your friend has people around her helping with all of these things, but maybe not, and maybe you're one of those people that she can and needs to be able to count on right now. Most people on treatment for Lyme Disease will at some point during their treatment (or for most of it) be too sick to drive; too sick to stand and occasionally even too sick to sit up in bed. If you were that sick, what would you need help with?

8) If You Are Going to Ask Them How They Feel, Be Sincere in the Question. Because Lyme Disease can affect all areas of the body, and do it simultaneously, it's not unusual for Lyme patients to experience and endure upwards of 20 to 25 different physical, emotional, psychological and cognitive symptoms in any given day. Lyme has over 100 known symptoms and sufferers can experience anywhere from 6 to 40 symptoms simultaneously. If you ask them how they feel and they rattle off 5 or 6 different ailments, chances are they're holding back and only listing the worst ones for that day. It's very hard to be honest with people when you have Lyme Disease, because you become acutely aware of the fact that most people just think you're whining. This feeling is reinforced by the fact that your friend has probably gotten that attitude from many doctors on their journey with Lyme if they've had it for any length of time. This is where that education I mentioned at the very top of this post comes in. The more you understand about Lyme Disease and how it can affect your friend, the better equipped you will be to really understand and sincerely want to know how they are feeling. This extra effort, insight and caring attitude will mean the world to your friend.

9) Help Them to Stay Connected to Life Before Lyme. This can be extremely difficult to do, but it's so important. Talk with your friend when they want to talk; Listen when they need to cry; And then remember that amidst all of the chaos of the current situation, your friend needs a life preserver of humor and of hope. Being able to laugh about shared memories, fun adventures and even crazy mishaps that took place before all this started, is really important for helping your friend to keep their spirits up. Laughing is therapeutic for anyone, and being able to think about all those fun and wonderful memories can help to remind your friend how sweet life can be, and that it can be sweet once again. Bring an old photo album full of all those hilarious old hairstyles; laugh about those embarrassing moments. Revisit the fun of the past, and then help your friend look to the future. Plan adventures for the months ahead; help your friend be creative in looking for specific ways to tailor those adventures to their unique needs of the present situation. Help them to begin a "bucket list" of things they want to do once they get better. Remembering fun times from the past and then planning fun adventures for the future helps to bring perspective, and can provide powerful, positive inspiration on which your friend can draw on their most difficult days.

10) Become a Lyme Advocate. This doesn't mean that you have to attend protests or post the latest Lyme articles to your facebook page; It means that you should become an advocate for your friend or family member that is suffering from a very real, very debilitating disease that is a political illness as much as it is a bacteriological one. Educate yourself about Lyme Disease. Learn about the controversy, learn about how it can affect the human body, and learn about how it is treated. When you're with other friends or family and the subject comes up, share what you've learned with others, and always speak up for your friend. Educating yourself about this illness may also help you to protect yourself and your family from an epidemic that nobody's talking about; and the more you know, the more you can also help to educate and protect others.

Thank you for taking the time to read through this post. Your efforts to better understand and support a friend or family member with Lyme Disease will go a long way to helping them to recover and have a successful outcome with their treatment. Anyone battling a major illness, no matter what it is, needs to feel supported, loved and cared for.