If you have found your way here not because you have Lyme disease, but because someone you love or know has been diagnosed with it, let me begin by saying thank you for wanting to learn more about it.
One of the most difficult things for people, particularly family members, of those who are fighting this disease is trying to understand it. It is hard to wrap your head around a disease that is so difficult to diagnose, treat, and understand. It is hard to recognize the severity of a disease like this when you look at the person and they seem fine…..they “look good.”
Resentment can often be created prior to diagnosis especially with spouses and partners, because the Lyme patient complains constantly about being sick and not feeling well. They may get depressed or have anxiety. They may explode in bouts of anger and aggression. They may panic and go to the doctor or emergency room sometimes on more than one occasion, only to be told they are fine and nothing is wrong. Often times they are labeled as a hypochondriac. When it is the person who is supposed to be your life partner or someone close to you telling you this, it creates a barrier, and a lot of negative emotions, anger, and resentment for both parties.
Please understand that this disease is a highly complex disease….it affects every person differently and to different severities. Diagnosis is not simple, treatment is not simple, and the Lyme patient struggles with trying to fight to get their life back and at the same time not complain too much so others don’t get frustrated with them. It takes an immensely strong person to battle this disease. And doing it alone is often not an option.
People that suffer from Lyme disease NEED support from those who love them. They don’t need you to “fix” them. They don’t necessarily need you to understand, but they do NEED you to love them and support them. They NEED you to cheer them on and give them hope. They NEED you to tell them that you believe in them and that they can do this….they can make it…they CAN get their life back.
They don’t need anyone to belittle them, tell them it is all in their head, that they look good, or that they are over-reacting. Unless you are in their body, there is no way for you to understand what they are going through, how they are feeling, what thoughts are going through their minds. And it’s OKAY if you don’t understand.
Lyme disease doesn’t just affect the body….it affects the mental state, the emotional state, the ability to communicate, the ability to cope. Often times the pain is just a small portion of the experience. It is difficult to pinpoint what is Lyme related, and what is not.
Understand that they may not be able to do as much as they normally can. They may be too fatigued or sick to go on outings, or even to maintain household chores and responsibilities. They may even lose their job or not be able to work. Do not use that as ammo against them. If they were in a car accident and in a wheelchair, would you be angry with them because they could no longer do all the things they used to be able to do? It’s no different. Believe me, they already feel bad enough that they can’t function normally despite their desire to.
Understanding and love are the best medicine. Knowing that you are there, no matter how bad it gets…..that you will help them out of bed….that you will tell them it is okay no matter what……that you tell them every day how proud you are of them for sticking with this and fighting it…..that you believe in them and their ability to beat this thing and get their life back. This is what they need more than anything.
Now, one thing the Lyme patient may never understand…..is that it is also very difficult for their loved ones to go through this. I can’t think of anything worse than watching a loved one suffer and be in pain, and feel as though their life is slipping away from them. Whatever you do, don’t push that blame on them. It is absolutely understandable that you may have a hard time coping with the effects of this disease yourself, but please do not take it out on the one that is fighting Lyme.
There are support groups for family members as well. And I encourage you to create your own support network of family and friends to help you get through this. Sometimes, you may just need a break, and need someone else to take the load for a minute. Maybe you need to go out and do things you love, even though your loved one can’t join you…..this time. Do what you need to do to keep yourself happy and balanced so that you can continue to support them.
Above all, focus on the love. If nothing else, love and hope will get both of you and the whole family through it.
Courage is looking fear right in the eye and saying, “Get the hell out of my way, I’ve got things to do.”