How to Understand AND be a Friend to Someone who has Chronic Lyme Disease

1.  Be flexible with plans and schedules.  The Lyme patient so badly wants to live a normal life that he may (will hopefully) still make plans for visits and outings.  However, the Lyme patient never knows whether it is going to be a good day or bad day symptom-wise.  They may have had a bad night with little to no sleep leaving them in much worse shape than a healthy person who is short on sleep.  The person may need to cancel/rebook with you.  This person will feel bad and may be fearful of losing your friendship if they have to cancel at the last minute, especially if they have to do this several times.  It doesn't mean they don't like you or respect your time.  They are ill and not in control of what is going on inside their body.

2.  If you are able to, offer your help.  A Lyme patient may be very restricted in the things they are able to do.  These kinds of offers may provide your friend with much relief and encouragement:

a) Offer to run errands.  Try not to just say, "Call me if you need something."  The unwell person often feels timid and embarrassed to ask for help and doesn't want to be a bother or a burden.  When you have time, or are going out anyways, call the person and say, "I'm going to the store, is there anything you need?"  Or, "I'm free this afternoon, do you need a ride to an appointment today, or do you need me to take you anywhere?"

b) Is there anything you need help with?  Washing dishes, cooking, cutting grass, cleaning, laundry...?

c) Offer to bring a meal (check for dietary restrictions).


3. If your friend is at a party, they may be very quiet, using all of the energy that they've got to cope with the noise and stimulation.  That can be a big effort for someone whose nervous system is greatly affected.  They are not trying to be antisocial and are probably very aware of how unengaged they are with the party, feeling self-conscious, possibly regretting having come because of the strain that it is, but trying to put on a brave face, pretending that they are normal, and trying to enjoy themselves.

4.  Call them just to say Hi, or send a text message and let them know that you're thinking of them. 

5.  Send a card or a letter via snail mail.  Send a note of encouragement.  Even a simple one -liner, "Thinking of you.",  "Love you"  "Praying for you." , Hoping you're having a good day.", is enough if you can't manage to come up with any more than that. You could also write a sentence about something that you appreciate/admire about them, reminding them that although their life is not 'normal', and they often feel useless,  that they have value. This mail WILL be an encouragement for the person who is suffering, who often feels alone, discouraged and isolated.  Your note will be read more than once. Your card will likely be put somewhere that it can be seen repeatedly and  will be cherished by the receiver.

6.  Send the person flowers or, pick some from your garden....this will brighten a person's day.  It tells them they are not forgotten and it brings a change of scenery -brightening their abode in which they spend copious amounts of time.  Although they are very thankful for a home and refuge, the monotony of being in the same environment day in and day out can bring down a person's mood and does not provide the emotional and cognitive stimulation that a change of scenery provides.

7.  Ask if you can pay them a visit and be flexible to the choice of activity.  Some Lyme patients have very limited energy/stamina and may only be able to handle watching a movie with you, or chatting over a cup of tea.  Don't expect a lot and go with the flow.  Be prepared to help out a little so that your friend doesn't over-extend themselves in trying to be a good host to you.  You can offer to bring a snack to make it easier on your host.  If you choose to do this, ask your friend if they have any dietary restrictions, they likely do and feel like a heel having to tell you about it.  Your asking makes it a lot easier on them.  Do not wear any scented body products or clothes that smell of laundry detergent or fabric softeners.  These chemicals
are an assault on your friend's already burdened immune system and may cause some very unpleasant
symptoms for them.

8. Keep in mind that your friend is very aware of how 'high-maintenance' their life appears to others, they are self-conscious about it and would change it in a heart beat if they could.

9.  If your friend forgets things you've told them, it is not because they weren't paying attention to you or don't care about what you have to say.  Their memory may be much impaired, something that they have little to no control over.  Or,  when you told them your troubles/story/anecdote/ they may have been so distracted by the discomfort in their body that they did not retain the information that you told them.

10. If your friend has trouble expressing themselves, struggles to find words or just sounds right out of it,
they are experiencing cognitive issues, some of which are referred to as 'brain fog'.   Try to be patient. There is interference in the brain that isn't overcome just by 'trying harder'.

11.  If your friend says one day that they can't do something but today they are doing that very thing, it is not because they were lying to you the day before, it is because they are having a better day today.  Do not judge them.  They don't understand the up and down nature of the disease any more than you do.

12.  Your friend most likely has very costly medical protocols to follow.  You can alleviate stress for them by organizing a fundraiser for them.  This is a great way to help and show that their well-being matters to you. This could even mean the difference between no treatment and treatment!  VERY encouraging!

13. Educate yourself on the condition.  This will help you to understand your friend better and it will help reduce tension/conflict and misunderstandings in your relationship.  It is another way to show that you care.

14.  Show you care by raising awareness of the disease.

YOUR FRIENDSHIP CAN MAKE A WORLD OF DIFFERENCE.

THANK YOU FOR UNDERSTANDING AND BEING A QUALITY FRIEND.