Patients with Lyme Disease or co-infections of Lyme Disease are NOT:
lazy, faking, sensationalizing, imagining things;
refusing to learn or grow, avoiding responsibility
going to grow out of it
contagious; it is safe to hug us
“just depressed”; if we are depressed, it is because of living with Lyme, not the other way around.
Patients with Lyme Disease or co-infections of Lyme Disease ARE:
actually, very ill
overwhelmed and frustrated their body cannot work the way they need it to
experiencing real pain, often excruciating
unique in that we each present with different symptoms; no two patients are the same
examples of what can happen to your friend, sister, cousin or boss who has been sick for a long time with no answers; we share our stories so others may find a shorter path to a correct diagnosis
Patients with Lyme Disease or co-infections of Lyme Disease DON’T want to hear:
You don’t look sick!
Are you ever going to heal from this? (Would you ask a cancer patient this question?)
But you seemed fine ten minutes ago.
But I thought you rested yesterday.
Oh good! Now you are better and you can go back to the way you used to live/work!
Maybe you should see a psychiatrist.
But you looked fine yesterday.
I already told you this.
Get a grip; there is nothing wrong with you.
So what, I get rashes all the time.
If this was real, the CDC would do something about it.
I know people who have real problems.
Are you sure you have a good doctor?
When you are going to finally be rid of this thing?
What time is dinner?
Are you sure you have Lyme Disease?
How can anyone have that many symptoms?
Do you really need to take all those pills?
Isn’t it time you get over this thing?
Patients with Lyme Disease or co-infections of Lyme Disease NEED:
validation they are truly ill and require treatment
help accomplishing the simplest of tasks
your love and your physical and emotional support
to feel wanted
others to know we are not weak
loved ones to make an effort to educate yourselves about our disease
room to tell our stories
friends and family to listen to those stories
to be reminded of things
funny cards, funny videos, or a nice note
a ride to the doctor
Is this Really a Deadly Disease?
In 2002, two years after receiving a tick bite, my Aunt Betty died from complications of Lyme Disease. I know others who have died and many more who have nearly died from complications from the disease and complications from their treatment protocols.
I also know too many Lyme patients who have taken their own lives as a result of losing all hope for any type of recovery or healing from Lyme Disease. Over the past six years, within Facebook support groups, we lose about one chronically ill patient a month to suicide. While we work hard at staying connected with one another, sending funny or inspirational cards to one another, staying up late with those in crisis, some patients choose to end their own suffering through suicide. This deadly aspect heightens our sense of time; time left in life, time lost to this disease.
This is not a disease to be taken lightly. It is not a disease to ignore. The patients are not faking it or lazy or trying to get out of anything. They are sick and need long term, serious, qualified medical help. They need the genuine love and tangible support of every person around them.
As the spouse, significant other, or any family member, you must be aligned with the patient and, most importantly, you must believe this family member is truly ill. That is the first step of support.
You cannot blame their symptoms on their lack of effort, or see them as someone who is complaining or who is griping.
Without medical knowledge and without the experience of dealing personally with the effects of this disease, you cannot proclaim that the only explanation is they are whining or not trying hard enough.
You must believe this family member is ill and support their fight.