It’s the beginning of 2020 and Justin Bieber has just announced that he has been fighting Lyme. Of course, he has been accused of all sorts, including having a drug addiction and flat out lying. This got me thinking about how common this experience is for those with Lyme (and other invisible illnesses). How should you respond when loved ones don’t believe you have Lyme?
It’s truly a beautiful thing when a loved one chooses to educate themselves about your condition, even if they don’t understand it. However, whilst there’s lots of information for people searching “When a loved one has Lyme”, I noticed there’s very little regarding how to respond when you’re met with hostility, disbelief and even aggression with regards to your diagnosis.
How To Make Loved Ones Understand
Simple: you can’t.
If you’re trying to, you are pouring you valuable (and limited!) energy into a bottomless pit.
Why is it impossible to make someone understand?
Understanding an invisible illness requires two things.
- Openness. This is when someone accepts that they may not know it all, and they understand that their experience of the world isn’t the only experience. An open person is not threatened by information that doesn’t fit their current understanding, and they are willing to update their understanding if presented with new evidence. They do not attach their sense of self or worth to what they know/don’t know, and as such, they’re not threatened.
- Good boundaries & Emotional Availability: Okay, okay, I know that this is technically two things! But bear with me. The reason I’ve grouped them together is because you can’t be emotionally available without good boundaries and vice versa.
So, what are they?
Good Boundaries
Let me begin with an example of what poor boundaries look like in the context of an invisible illness. It might look something like this:
You, as the person with Lyme, has experienced only the words. And they’re hurtful. But you haven’t experienced the internal workings of your loved one. It’s important to remember that the way people treat you is always about THEM, not you. Let that sink in for a moment.
In my experience, when people react negatively to a revelation of any invisible illness, it is about their fear. In the example above, the loved one has poor boundaries when it comes to rescuing people. They do not know the difference between helping and rescuing. Helping is providing assistance to someone within reason. This means that you don’t neglect yourself in order to serve someone else, and you offer assistance after asking what is needed. Rescuers often jump straight in, neglect their own needs and decide themselves what the other person needs. This is an utterly exhausting way to live, and often leads rescuers to completely shut down in the face of what they perceive as someone else who needs rescuing.
Emotional Availability
This goes hand in hand with what was said above. An emotionally available person offers emotional support within reason. Again, they do not drain themselves of all resources to be there solely for one person. They accept that they cannot give from an empty vessel. An emotionally available person will also recognise that different types of relationship warrant different availability levels.
For example, your old school friend you’ve not seen in years might offer a consolatory comment on a Facebook status, but probably wouldn’t call, visit or send cards. That’s completely normal given the distance of the acquaintance with this person. A best friend or family member would want to go much further, if they are emotionally available.
Emotional availability also allows someone to face your negative emotions without being overcome by them. Due to any number of negative life experiences, people often run away from other people’s displays of negative emotions, because they simply do not know how to handle it. This also happen a lot with grief. Many people disappear off the face of the earth, not because they don’t care, but because they just don’t know how to help.
An emotionally available person can be comfortable knowing that there may not actually be anything they can do other than listen.
Openness and emotional availability are not traits that you can force on someone else. They must be developed internally. Period. No exceptions.
Why Some People Can't Believe You
Notice how I said can’t rather than won’t? That’s because these loved ones are often responding out of their own fear, trauma and issues instead of responding to you and the information you’ve presented.
As I said above, the way people treat you is about THEM, not you. In most cases when loved ones don’t believe you have Lyme, it is because they are frightened and unable to handle it in a healthy way. I hope this helps you to shift your perspective to a slightly more compassionate view.
Of course, there are exceptions to this. Sometimes, people suck. And you’ll probably never know why and you can’t change that, either!
How To Respond When They Don’t Believe You Have Lyme
So now we know that there’s very little you can do to change how a person responds to you, let’s look at ways to respond.
If the relationship is at risk and you want to preserve it, sometimes you need to exercise a boundary and accept that this loved one will not believe you. You may need to distance yourself a little. Of course, if this is an unhealthy relationship to begin with, you have my full support to get the scissors out and cut ties for your own mental health.
If your loved one is a classic rescuer, being very clear about what it is you require from them can help them to not feel so threatened and overwhelmed. Specific requests such as “I would just like someone to talk to”, “I would really like some help scheduling my doctors’ appointments” or “Please could you pick up my prescription” are all defined, finite requests. The benefit of this approach is that you take the ‘tension’ out of the interaction. The rescuer has been given ‘permission’ to not dive in. Over time, they often feel safer and will typically come round.
Above all, try not to get angry, defensive or upset. Easier said than done, I know. Sometimes, it takes people some time to get comfortable with the revelation of an invisible illness. It can be tempting to push harder, especially when we have a need, but giving this loved one some time and space may be the best course of action.
Alternative Sources of Support
It makes sense to look for alternative sources of support if you find yourself in the position of not being believed. Here are some ideas.
Online Communities
There is a large, active online Lyme Community. Many people take to Facebook, Twitter and Instagram to share information and support.
NOTE: It can be easy to disappear into these online worlds, so be careful to still have outside interests. Lyme is not your identity and it is certainly not the only thing you have going on. You are a valuable, lovable person who just happens to have Lyme. See the subtle difference?
Medical Support
Check out our article on using alternate diagnoses to your advantage. We talk about how to get medical support when doctor’s refuse to entertain Lyme.
Along with physical health, mental health is a huge part of your overall wellbeing. Lyme is HARD and there is no shame in talking to someone. A brilliant place to start is with MIND, the mental health charity.
Relationships: Old and New
Friendships can blossom in the most unexpected places if you keep an open heart. It also helps to remember that many other people with Lyme will know exactly what you’re going through, and this is where the online communities come in handy!
Another route is to reach out and rekindle relationships that may have fallen into the background. I would advise finding mutual ground with these people with a view to rebuilding a relationship, rather than simply seeking someone to support you.
When Loved Ones Don’t Believe You Have Lyme: My Top Tip
Try not to respond emotionally even though it can feel like a gut punch, and try to remember that you’ve been living with this condition for some time and have had time to adjust accordingly. Also remember that it’s ok to walk away from relationships that are not good for you!
Do you have loved ones who don’t believe you have Lyme? Have you found a good coping mechanism for this? I’d love to hear from you – let me know in the comments below!
