Monday, August 12, 2013

How to Help a Lymie Out

My last post on Isolation briefly touched on the topic of how it is difficult to help someone who has Lyme Disease. This post will include a few tips on how to help out a Lymie along with listing and explaining the best presents I have received throughout this journey to wellness. This blog is written from my personal point of view of going through Lyme myself and watching my sister and father battle it, too. If your friend has Lyme, talk to them about this, their preferences may be different than my own observations. One of my favorite Lyme sites has a great article, "So You Know Someone With Lyme Disease--A Guide To Understanding Their Struggle,"that can help you understand how helping someone with Lyme can be difficult.

Tips to Help Loved Ones Dealing With Lyme Disease:

1. Try to understand, but know that you cannot. Lyme disease differs vastly from one patient to another, so methods of helping Lymies vary as much as the disease does itself. Be patient and kind. Let them know that you are there for them. Show them unconditional love and let them know that you will not allow this disease to change your relationship, unless to strengthen your bond. Do not tell them, "Well, you don't look sick" or try to cheer them up by asking, "Are you going back to work soon?"

2. Believe them. Most Lyme patients have been told everything negative about their disease from doctors, family, the government, insurance, and friends. Some common themes: your disease is not real, it is all in your head, you are depressed, you need to get over it, Lyme does not exist in the South, you need to tough it out, if you just pushed through this you would feel better..., etc. Just letting them know that you believe and support their diagnosis and have their back will do wonders. Also, if you feel so inclined, feel free to put anyone in their place for talking badly about your friend being sick. I know from personal experience that hearing that your 'friends' are telling your other friends that you are not really sick is an incredibly scaring experience that is Hell to go through. See my previous blog, My Private Struggle, for a little more insight into the story.

3. Spend a few minutes to research their disease. Their is an overwhelming amount of information on Chronic Lyme Disease out there, but do not let that stop you. Focus on symptoms of chronic lyme, learn what a "herx" (Jarisch-Herxheimer Reaction) is, learn about the lyme diet (gluten-free, sugar-free, anti-inflammatory, etc) and simple home remedies that can make the patient more comfortable. Just learning the Lyme lingo will show how much you care. Do not know where to start? Join informative facebook pages like Alabama Lyme Disease and When Life Hands You Lyme. A great place to start out for simple and informative research is one of my favorite lyme sites, Tired of Lyme (tiredoflyme.com). It is not overly "medical" and has articles that are short and easy to read. It will give you a much better understanding of this disease, from all angles.

4. Send them uplifting messages, bible verses, or words of encouragement. This can be done quickly on facebook or email. Or you can text it to the Lymie. I especially loved the ones that were mailed to me...I tape them on my mirrors and other prominent areas in my home. That way I am surrounded by positivity at all times and reminded that this disease is not going to isolate me. It reminds me that I have people cheering for me and supporting me through this journey. Here is a post with some of the uplifting messages I have received (click here).

5. Do not give up on them. You will probably ask your Lymie friend or relative to go grab a drink, get lunch, or even get coffee/tea. They may say "no" every time you ask, even if you are persistent. But do not stop asking. Instead, tailor your questions to suit the Lymie better. Ask if you can bring by some herbal tea for us to share. Or bring over dinner (gluten-free, please!) and a movie. Let them know you are planning on coming over in your pajamas. We have a lot of pride--I often turn people down from visiting because I am in my sweats and my house is a mess (something I am working on getting over). Let them know that you do not judge and you accept and love them as they are. Knowing you are coming over in your knock-around clothes makes us feel better about our appearance. It takes a long time to look put-together when you have Lyme, and knowing that you will be in your PJ's, too, makes us feel more comfortable. Like we are finally not the odd man out.

6. Help out their primary caretaker. Be it their husband, wife, child, boyfriend, girlfriend, sibling or roommate, the primary caretaker is most likely spread very thin and under a lot of stress. Ask to take them out to dinner sometime--they need time to act "normal," too. One of the best presents given to my mother when she was in the crux of nursing my father back to health during his battle with Lyme was a spa package. She was able to get pampered and relax. And when she returned home, she was rejuvenated and ready to lovingly take care of my father again. Being a caretaker is often a thankless job, so if you are on the outside looking in, be sure to express to the caregiver how much you appreciate them taking care of your loved one. In most cases they are stretched way too thin but will never let the Lymie under their care see it, so they, too, often suffer with frustration in silence. Sometimes they just need an outlet to vent to. Helping the caretaker will also help the Lymie.

7. If you are a primary caretaker, make sure to take time for yourself. The pressure and stress can make you sick, and when you are sick, your ability to take care of another is depleted. Always make sure to take care of yourself first so you can be your best self to take care of the Lymie in your life. I know this is hard to do and can sound counter-intuitive, but it is so important to take care of yourself first and then take care of your "patient." It works out much better in the long run. Also, do not feel guilty about leaving the house every once in a while to do something fun with your non-sick friends. We understand that you want to live your life just as badly as we do and sometimes we feel guilty for holding you back. So go out and have fun when you get the chance.

8. Check on them and let them know no response is needed. Feeling insanely overwhelmed is a symptom of Lyme disease..I remember when I first announced it on facebook and started blogging I was overwhelmed with loving messages, texts, and phone calls. I recall feeling so much love and support but also feeling anxiously overwhelmed...I needed to respond to all of these people who took the time to send me words of encouragement, but sadly that simple task seemed more like a mountain than a mole hill in the shape I was in at the time. The messages that helped me the most were encouraging and uplifting, but the writer let me know the message was just to let me know that they were thinking of me and that they did not require a response. It took the pressure off of me and allowed me to just sit back and appreciate the love that was being shown to me. I often get texts from friends saying, "You don't have to text me back. Just letting you know that I love you and am praying for you. Let me know if and when you feel up to talking or hanging out, but I understand if that cannot be anytime soon. Love you and just wanted to let you know that I was thinking about you."

9. Help with Errands. When you have Lyme disease, the simple task of picking up a few things from the grocery store is at times impossible. A good way to help would be to say, "Hey--I'm running errands on Sunday and wanted to see if you needed me to pick you up anything. I will be passing your pharmacy and going to the grocery store anyway, so I decided to see if you needed anything while I am out." When people ask me if they can do this for me, it is a God-send. I do not want my disease to put anyone else out. Sometimes I feel that I have 'maxed-out' my favors from certain people (although they assure me this is not the case), so it is hard to be constantly asking for help. When you make it sound like its not a big deal--like you are not making a special trip or going out of your way--it is easier for us to accept the generous help that you offer. It is easier to accept help when someone offers you something specific, not just a generalized "let me know what I can do to help you," because in my case, I feel guilty assigning you tasks to do for me.

10. Give (appropriate) Gifts. While sending an Edible Arrangement is a very sweet idea, it is not a great gift to send a Lymie. If your friend with Lyme is anything like me, I can be strong and stick to my diet unless the "bad" food is put directly under my nose. On the days that I do not possess as much willpower, I will end up cheating on my diet if the "cheat" food is right there in front of me and I pay for it by feeling sick afterwards. Great gifts are also relaxing or healing gifts. Think herbal teas, rice packs (to heat up in the microwave for pain), relaxation or guided imagery CDs, prayer cards, inspirational books (something that only requires a page or two of reading a day...most lymies memories aren't up to par and reading more than a few pages is almost impossible), or a plant that is easy to take care of, like lucky bamboo. Gardening is very therapeutic to those with chronic illness--being close to nature and caring for a living being created by God is very cathartic. Give them something that requires at least a little effort to keep it alive, but not too much so that the plant does not survive.
Another gift idea would be to offer to pitch in for their supplements one month. But you have to have the right kind of relationship for that--you don't want the Lyme to feel like a charity case. If you are financially able and feel comfortable discussing the topic, ask your Lyme friend if you can help with a portion of their supplements for that month or next month. Supplements and vitamins are so important to help protect our bodies from long-term treatment...but the cost really does add up. Taking some financial stress away (even in the smallest amount) does wonders for a Lymie. Something as small as $5 or $10 to add to their medical fund is a great way to show you care. And in doing so you are helping them heal when they use the supplements. Just be sure to say "help pay for part of your supplements" unless you are prepared to foot a $200-$300 bill.

11. Donate to their Cause. Find out if your friend with Lyme is tied to any particular Lyme advocacy or support group. In my case, I would love for my friends to donate money to the Alabama Lyme Disease Association. Many Lymies have a Go-Fund me page--Help For Ian is an excellent example of a great cause (one that is close to my heart) to donate to. Here is a quick blurb from Ian's story, "Ian contracted Lyme Disease (at the age of 7) in December 2010  and, after seeing 25 doctors and specialists in 3 states, he was finally diagnosed in June 2011.  We had to travel over 1,000 miles to find a brilliant and compassionate Lyme Literate MD who would diagnose and treat him." These Go-Fund-Me pages are a great way for Lymies to be able to afford the immense cost of treatment, their medicine, and their vitamins/supplements. The smallest donation, even $5, will make a significant impact on the life of the Lymie you are donating to. Financial stress can make the healing process for Lyme disease take so much longer. 

12. Put them on the prayer list at church. Then tell them. I have learned through this disease the intense and divine healing that comes from the power of prayer. Especially having so many prayers being said in your name by so many. It is a wonderful, divine, and healing gift to give someone and a great way to show that you care.

Click My Prayer Quilt post to read about the best gift I have received during my battle.