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10 Things Family Members Should Never Say to Lyme Patients

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Family plays a huge role in our entire lives. From the minute we open our eyes, to the minute we get our diagnosis. Family is different for every single person, how they love you or not. During chronic illness we become dependent on those around us to survive and have a happy daily life. It’s not because we want to, but maybe because we can’t walk that day, communicate or drive a car.

Lyme disease is a very complex and misunderstood for many reasons. The Centers for Disease Control and Prevention (CDC) does not believe chronic Lyme disease to be real, so this ripples to how doctors treat us or don’t. Their views are often seen as more valid than their patients, so if an issue occurs and a doctor doesn’t believe it, family members may not either. Another reason for all the confusion is also how differently each person heals from Lyme. Some get the typical bullseye rash, pass all the CDC standard testing, and get on antibiotics quickly. Often they don’t have any more issues. If you (like me) didn’t get a rash or a positive test, and struggled for years, my body has an extremely high level of Lyme, and other co-infections that aren’t covered by the CDC test.

Family should be our big support team during years of struggle, but that’s not always the case. Family dynamics change when a member fall ill, and people’s true character really come out. We are in a very vulnerable place, every day, so even the smallest thing can snowball into something huge, causing more damage to our health. These are things that loved ones should never say to their Lymie family member:

1. “I don’t believe you, or that you are actually sick.”

How can we have any loving relationship when there is no trust? It’s one of the most hurtful things because Lyme disease is an invisible illness, so I may look the same but on the inside, it’s hell. You just can’t tell. This also creates a division forever, we won’t forget.

2. “If you don’t love me, the rest of the family won’t support you.”

Emotional blackmail works. We do too much to try to keep our families together and in our lives, when all their actions show they don’t want to be. It’s so painful and a bitter reality to accept.

3. “Your anxiety, depression, PTSD, suicidal thoughts, panic attacks are just manipulative tactics to get love and attention.”

Insulting anyone’s mental health is extremely degrading, dangerous and cruel. It’s meant to be. It’s meant to only make your mental health worse, break your self-esteem, and push you into a darker place. This shows more of who the other person is than you. Their ignorance on how Lyme disease and other tick borne diseases affect the brain is abdominal.

4. Any yelling, screaming or cursing.

This is completely terrifying when we are already in a terrifying place. We can’t escape our own bodies or circumstances, and sometimes we can’t escape verbal abuse from caregivers, family members and friends. This sets us and out health so far back because now we have to worry about our safety too.

5. “Let me know if you need anything. Call or text whenever and I’ll be there!”…And then never respond to any contact.

We need as many supporters as we can get. Daily life is flooded with problems and every person who’s actually there for you plays an important individual part in your healing. Pretending to be a good person is an annoyance and disappointment we just don’t need.

6. “I saw a great photo of you on social media, you must be feeling so much better!”

A photo doesn’t tell the whole story, especially on social media. Again, I have an invisible illness so I can put on makeup and smile, but feel like my legs are too weak to stand, the sun is hurting my eyes, the humidity is aching my bones. We still need help even if you assume we are better. This is a lifelong disease.

7. “At least it’s not cancer!”

God forbid such a terrible thing, and this doesn’t help me feel better. Cancer has much more funding for research, treatments, and awareness. People automatically understand the severity of cancer. Some people with cancer have gotten better before me, and some I know have died. Comparing diseases is not uplifting.

8. Throwing objects, standing too close, physically intimidating or abusing.

This is never OK, but often happens so quickly we don’t know how to respond. Our brains are foggy, and we need this person for a ride or our next meal. It’s easy to allow this to build up until a real explosion, where we truly get hurt and again, our health is damaged. Violence is never OK and should not be accepted as love, or in your life at all.

9. “I never said that.”

We may have a shaky memory but we do know what the truth is. Invalidating our truth or story can be a huge travesty and impossible to comeback from. Being viewed as another “crazy Lymie” and especially as a woman, it’s very hard to get people to believe me when they just don’t want to. No matter how hard we can try, deniers gonna deny! And we are better off not engaging.

10. “It’s all your fault.”

In general, Lyme patients face so much doubt from society, to the medical system, and more. Blame doesn’t solve anything but cause more pain. It’s the perfect excuse to abandon someone, point out all their perceived flaws, and use gossip against you, leaving them free to move on without guilt.

These has all been said and done to me during the last two and a half years of treatment, and it has been worse than chronic Lyme disease itself. I had to reach the point of no contact recently and it is extremely hard and lonely. I want to be understood, and it will never happen.

As as long as you focus on staying true to yourself, you’ll be OK. It isn’t easy, I won’t lie. But from being just OK, you can grow to happiness by finding people who truly love you for you. Without questioning who you are, your intentions, they will just love you because you deserve it and add love back to their life. Family is who we choose and who loves us unconditionally, through sickness and health. It’s a team we all need to support, so get out and find your people. We are a strong chronic illness community and are always here.

Getty Image by AntonioGuillem

Originally published: June 25, 2018
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