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ME/CFS Patients Deserve To Be Loved

ME/CFS patients deserve to be loved. We are worthy. We are whole people. We are not defined by sickness. We are not invalids. We are valids. We are whole, beautiful, wise, resilient human beings with more to offer than most healthy people. How many people have experienced what we have - the other side of this life - to know what it really means to be alive and appreciate every aspect of it.

I’m tired of feeling like I’m not worthy of being loved by another person. It’s not fair to myself and it hurts.

I have so much to offer another human being. The whole spectrum of human emotion together with tenderness, kindness, understanding, love, devotion, sacrifice.

I want to be in a relationship with a woman and feel that beautiful dance of reciprocated love where both people are opening their souls to each other, both people are honoring each other, respecting each other, praising each other and giving themselves to each other in all ways.

I want to run with a beautiful woman, hands held, through a field of daisies and fall together laughing only to find our eyes meet and both feel so much love at the same time. I want to feel it for her, and I want to feel her feel it for me. I want us to meet there in that space of complete vulnerability where we are both letting the other person in to the deepest halls of our souls. Opening those doors and taking a leap that those sacred grounds will be treated with reverence as we treat theirs with reverence.

And as those hallways are opened by both of us and we find safety in each other, a trust is found that is profound beyond words. We feel completely safe in every part of our body and soul with them. There is no part of either of us that isn’t accepted, understood and loved.

This is true love to me. And it is something I miss in ways I cannot express in words. The safety, warmth, support, comfort and simple beauty of true love is something truly sacred.

And ME/CFS patients deserve true love. No matter how sick we are, we are worthy of true love.

However, in my experience exploring love with ME/CFS, even mild ME/CFS, the physical limitations imposed on us by the illness impose limitations on what we can do with another person, which usually limits how we can connect with other people.

When I had mild ME/CFS, I had many mental symptoms and wasn’t myself and there was one woman I fell deeply in love with who didn’t see me through the illness and what it was doing to my mind. I was becoming sensitive to human presence, which caused symptoms that at the time I thought was social anxiety but now understand to be the illness getting worse.

When I had moderate ME/CFS, I was housebound, and I had a couple relationships during this time. I couldn’t go anywhere with them except for a couple times when i made exceptions and then paid the price dearly afterwards. I also could no longer sleep in the same bed as another person, as my sensitivity to human presence had gotten stronger. So they could never spend the night. This combination made it so the relationships just didn't work for very long because we weren’t able to connect deeply enough within these limitations. It also required a lot of sacrifice from them and their needs in a relationship. So they often decided they couldn't sacrifice that much anymore at some point.

When I was extremely severe, I couldn’t communicate in any way or tolerate the company of other people, so at that point even a limited relationship was impossible. I remembered past loves in my mind though, and so I did have a lot of love in my life even laying there still, alone in my room.

Now with slightly less severe ME/CFS after abilify made me a bit better, I am still open to love and have had a few experiences with relationships. I still can’t tolerate being in the same room with another person unless it is absolutely necessary. So my recent relationships have been all through chat. A chat only relationship is wonderful in many ways esspecially if you find an amazing person. True love is possible through the medium of chat. But I can’t see her face in person, I can’t read her body language, facial expressions, tiny movements when i say things that would allow me to read more into her reactions and her intentions and meaning behind the words. It’s just plain words. So it remains limited. I felt like I understood them deeply but there are some things them will never be able to understand through words alone. It is love, but the depth of our connection is limited by ME/CFS and my inability to be with them in person.

We deserve true love. And true love is possible even for the most severe cases of ME/CFS, even if it means retreating into your mind to find it. But it is also important for us to come to terms with the limitations we face and what is possible for us. I can’t meet someone in person and have that experience. I cant go running through the field of daisies with someone. I can’t even hold a hand. And it hurts not being able to do these things. It often feels unbearable.

But love is also one of the most beautiful parts of my life. So we have to be open to what is possible and try to accept our limitations with it as well. There is boundless love out there for all of us, but it will also come with painful limitations. But it is absolutely worth it.

Go for love. <3


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