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A Letter to a Friend

I wrote this letter to a friend who I had to stop talking to due to the usual prejudice and lack of understanding about ME/CFS. I did not send it. I just didn’t see the point in putting this out in the world when I wasn’t going to be a part of his life anymore anyways.

The final nail in the coffin for us was a phone conversation where he invited me to a party in San Francisco (I was living in Berkeley just across the bay) and I told him the driving plus a party were too much for me that day. He proceeded to lecture me for about an hour about how sometimes you have to push yourself to keep your mind healthy by getting out to things like parties sometimes. What he didn’t understand was that I was already pushing myself but you have to prioritize when you have ME/CFS and I chose other things like continuing to make art instead of going to parties, which I wasn’t all that into even when I had the energy. I didn’t talk to him anymore after that phone call. But it was a long time coming. A lot of similar remarks and subtle judgements like that all the time.

I contacted him later after not talking to him for a long time because I was at the time housebound living with my parents and trying to help setup the Chronic Fatigue Syndrome Research Center at Stanford (CFSRC) and he was the best logo/design artist and web designer I knew so I decided to swallow my pride and reach out to him anyways. That’s why it talks about reaching out again in the email to him. He turned down the request for help, calling it a personal project and comparing it to another friend’s music website. That’s how seriously he took this illness. The CFRC has the potential to help millions of people in this country alone and he gave that no credence. He also accused me of having a "defeatist" attitude while trying to explain the phone conversation we had last time we talked. I definitely decided not to communicate with him anymore after that.

I realized that just putting the words on "paper" was enough and was therapeutic. And I thought it could be therapeutic for many of you in the same way, reading a letter to someone who treated me the same way many of your friends/family treated you before you were forced to cut them out of your life (or if you are sadly dependent on them, put up with it)

This email is emotional and a bit angry. Viewers who are sensitive to that should use discretion when deciding whether to read it. Blanks spaces are used instead of his name.

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Unbelievable _________. You're a smart guy clearly. And you have moments of real kindness and compassion, which I used to really like. But you can also be arrogant and judgmental, which leads to you passing quick judgement on things you have no understanding of. This is something I've been way too accepting of and quiet about for too long.

You have never even tried to understand my situation. You could never know how I have reacted to this illness because you have no idea what I'm up against. You don't even know anything about ME/CFS. And no, a fucking wikipedia search isn't going to cut it here. Ignorance, combined with your arrogant and a judgmental mentality is a bad combination. You're like a guy sitting at home watching TV, and you see a news broadcast of someone walking slowly, and you just yell out "lazy", but what you don't see on that little screen is the 60mph wind that person is walking against.

The truth is that you think if you were in my shoes, you wouldn't be sick because you think you know how to live better than I do. Now it might be true that you wouldn't be sick in my shoes but that's because you never would have done any of the traveling I have done in the way I did it, which is why I got sick. You'd be here, safe in your carefully crafted isolated little world. I took a risk, to be out in the world in an extraordinary way. You stayed at home and played it safe. The reason I am sick is because I am the opposite of your accusations. If anything, you are the one who needs to get out more and stop keeping yourself deluded by controlling your surroundings.

Was all that traveling defeatist? Living in a small village in Jamaica, or in the rainforest with a Shaman's family, or going to India in spite of being sick, because I was doing what I wanted to do and not letting it get in the way of my dreams and goals? Or putting off school to stay in India and study Buddhist philosophy? Or staying in India for 3 months after I got sick, deathly ill, because I wanted to stay for a year and had big plans and didn't want to come home? Or how about starting a wedding photography business when I was too sick to hold a full time job, because I tried to make the best of my situation by using it as a chance to work towards a dream job. Turning a shitty situation into an opportunity. And pushing myself harder to do that than you ever have in your life. I was sick as a dog by the time I got my car loaded in the morning and the rest was will power alone, for 16 hours straight. And incredibly bad for my health. But I DID IT ANYWAYS because I fight for my dreams. I have continued to get sicker in part because I refuse to rest as much as I should, because I am optomistic and because I push myself.

How about seeing every single doctor in every single area of medicine for 8 years looking for a diagnosis? Real defeatist huh? I could make a long list of the reasons your accusations are ignorant but I'm not going to take more time. You don't deserve it.

You have no idea what I have been through or how hard I have tried to wait out, overcome, and make the best of a devastating illness that has slowly made all of my dreams more and more difficult to achieve. It is vile that you would make such simple minded judgements about me and my life.

Rather than be an actual friend, you just told me that because I wasn't going out to parties as much as you thought I should I was being "defeatist". You made quick assumptions about what would be good for me, and then judged me based on whether I did that or not. And you said this with no understanding or knowledge of the reasons for my decisions and actions, my condition, or ME/CFS. Little do you know that pushing past the energy limits that patients with ME/CFS
develop is the absolute worst thing we can do. It's what makes people get worse, and why some people wind up bedridden for decades.

It's unsupportive judgmental pricks like you that make it much more difficult for people with this, and many other serious illnesses, to survive. People like you who would rather make quick, easy judgments to reinforce your own cozy delusions about the world than stop for one second and put yourself in another's shoes and make even a tiny effort to understand.

I knew my email reaching out to you for help was a mistake. But this is an important project that could benefit millions of people [The Chronic Fatigue Syndrome Research Center at Stanford] and I decided to put my own interests aside. Well, you've shown that you have not changed.

Good luck __________. Do not respond.

Whitney




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