Monday, March 27, 2006

Lupus and Loneliness (originally posted 12/09/2005)

I went shopping yesterday!

Many people would not consider this such an exceptional event, but when you are primarily housebound (like me) a trip to do some Christmas shopping is tantamount to preparing for a long hike in the woods. I packed my meds, bottled water, throat lozenges and made sure to wear warm comfortable socks and shoes.

I had not been out of the house since Thanksgiving.

My immune system is suppressed by the treatments I receive for the lupus, so even a minor cold has the potential of turning into pneumonia.


But, I decided... no demanded... that I would go Christmas shopping at least once.

So we did.

And the whole experience was such a shock to my system!

I really felt energized by being in crowds.

What shocked me is how my social skills have really changed.

I don't see strangers anymore.

I look at people and just feel connected. Maybe that is from being chronically ill.

When you have lupus, you have a deeply personal relationship with human suffering.

Everyone suffers in one way or another... so no one is technically a stranger when you look at people from that perspective.

What did surprise me is that people don't look at each other.

Or (this one I had fun with)... the shock people show when you smile at them with a direct look into their eyes.

"I see you! Hello, friend!"

I could be standing inches from another in a store aisle, and they act like you are not in their space.

That is really weird.

I chatted with anyone who got near me.

I must have looked like the village idiot.

I'm not, but I do suffer from a deep terrible loneliness.

When I was diagnosed my world just tumbled away from me.

I went from being an active mental health professional to sitting home alone all day.

My career centered on seeing all kinds of people all day long. And socializing with my co-workers. And then socializing outside of work with church and theater activities that Hubby and I enjoyed.

Oh, and going to restaurants, shopping, movies, traveling.

All gone.

The wound has deepened since my friend, Ellen, died this past September 2nd from ovarian cancer.

Yep... lonely has a way of catching up with you when you have lupus.

It's not just the big changes that can rattle you.

Not everyone with lupus "crashes" the way my body has. Some people with lupus are able to maintain a relatively "normal" lifestyle.

But, that doesn't make someone with lupus immune (excuse the pun) from loneliness.

You can be in a crowd and still feel lonely.

I feel that one of the most frustrating burdens with being chronically ill is the "You just don't get it..." syndrome.

No matter how I try to explain myself to someone who is healthy... well... sometimes it feels rather futile.

I feel that you really have had to walk one mile in my moccassins (or anyone with chronic illness) to tap in to what we are trying to tell you.

If I cancel going out, it is not because I don't want to be your friend.. it is because I am on my butt, exhausted from laoding the dishwasher this morning. That's all... nothing complicated about that.

If I can not talk with you on the phone, it is not because I want to be rude. It is because I have lupus brain fog, and the sound of your voice is causing me confusion (which only adds to my fatigue). I want you to be my friend, but please let me pace myself.

Not everyone understands this.

I lost friends in the beginning.

I think that anyone with lupus can attest to this.

People love conditionally.
There usually are strings attached.

If you change... and whoa nelly... lupus will change you...

some folks will thow out the red flag warning you not to change.

I got that so much it broke my heart.

I was active, I volunteered my time cheerfully, I could always be depended on to give that extra mile. You could talk my ear off, I was a shoulder to cry on, a pillar to lean on...

and then I just couldn't anymore.

My pal, Ellen, told me after she was diagnosed with cancer, "You sure do learn who your friends are."
Yep, you sure do.

And the transition period from losing relationships, healing, and gathering the courage to move forward to new friendships is excrutiatingly painful.

My rescue came in the form of the internet.

Using a Lupus Message Board (AOL) I met a ton of beautiful people who really knew what I was going through.

I do not know how I would have managed without their loving support.

Stuck home all the time, I could still connect with people via the internet.

The correspondences with my online pals is still a primary source of coping with lupus for me.

Having lost my closest friend to death recently has knocked me backwards twenty steps. I can attest to this.

But, even this experience opened my eyes.

I have supportive family. I don't have to look too far for the connections needed to stay sane.

I have a sister with lupus. This has been a Godsend.

Now that I have been two and a half years from diagnosis, my family is able to start talking about all of this.

Family have a tendency to fall into old dysfunctional patterns when a memebr has a health crisis... my family goes for the duck, run and cover... don't talk about it approach.

But, that is dissolving and in the past year I have enjoyed some of the most real, intimate conversations with family... ever.

I fight with wanting to crawl in a hole and drop out of the human race DAILY.

I wake up in the morning and still feel the emotional pain of not getting into my good work clothes, driving a car, picking up my coffe and treat on the way to the office, and doing the career woman thing.
Most of the time I just desparately want to hide under the warm blankets and hope that this all will pass.

But, it doesn't.

Lupus is a tough master... you not only have to cope with the disease. You have to work hard at it.

And I am telling you right now that surrendering to despair and keeping yourself isolated is going to hurt you big-time.

To break your social isolation you are going to need to be brave.

You are going to have to face the reality that you are going to be rejected along the way by folks.

Please do not blame yourself for that.

Many people need to grow in compassion.

I have been coping by trying to give back. I write about lupus and offer this writing to try to make this lupus journey easier for those who are on the same path I am on.

I also keep many interests that have nothing to do with lupus.

There's a lot to be said for reaching out beyond yourself.

Most of the major faiths offer this task as part of your soul's growth process.

When you reach out beyond your pain you are going to be surprised by how many people want to connect with you. You help others and the surprising gift is that you receive the rewards of your efforts seven fold.

Here is an excellent site that explains just why we question our sanity at times when we try to talk to others about the suffering we encounter with lupus:

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