View Full Version : Lupus and working- the struggle continues

10-27-2013, 10:15 AM
I write this with a heavy heart and frazzled mind. For those of you who have read my posts, you know that I have had a difficult time dealing with my workplace, particularly regarding my decision to raise and train my own service dog.
The irony being that I work for a center for independent living; the one workplace I thought would be understanding. Was I ever wrong! I did not expect, nor want sympathy from my boss and coworkers. I did expect acceptance and respect . What I got was coworkers who flat out told me they didn't understand why I THINK I need a service dog and a boss who said that I don't need a service dog, I need a walker and that a service dog couldn't do what I needed him to do! He is not a doctor, nor is he an expert of any kind except perhaps an expert on ignorance . He also said that he didn't want a dog in the office. He knows that legally he can't deny me having a service dog, however he does have a history of bullying and I am no exception to his wrath.

Karma is now 4 1/2 months old. He is coming along beautifully in his training. He does have a few years of intensive training to go before he can be considered a full fledged service dog, but in the meantime he is considered a "service dog in training" and afforded the same rights and privileges as a full fledged service dog. To talk to my coworkers one would think I was planning on brining in a Tasmanian devil on a leash! I assure you that karma is not a wild animal, he is better behaved than a lot of people I know.
All of this, not surprising, has exacerbated my lupus adding to the frustration. It has gotten so bad that at one point I was starting to question myself. Am I really sick? Do I really need a service dog? So I took some time out and I reflected on my life. I thought about how my life was before lupus and how it has been since. I reflected on the progression of the disease, of the changes it has forced me to make in my life. Yes I thought about what lupus has taken away from me. I thought about how lupus has affected my quality of life. And I thought about the conversations I've had with doctors, friends, service dog trainers and my husband who has been on the front lines of my lupus battle. All stated that yes, a service dog would positively affect my quality of life. My husband in particular appreciates the thought that karma will help me with my mobility and if he can't stop me from falling, at least cushion the fall, help me back up and bark for help of necessary. We've just begun exploring all the ways karma will be an asset for me. Yet, because of my boss's and coworkers comments and attitudes, I almost gave up. That angers me so much! That I allowed them to make me feel that way.
I have a coworker who has cerebral palsy and is in a wheelchair. She and I have talked and we agreed that in some ways she has it easier than I in the respect that hers is a visible disease therefore forcing people to accept her Illness. Nobody hassles her or denies her requests when she need special accommodations .
The boss claims he "understands" Lupus since his mother and an aunt had it. If that is so, then why is he giving me such a hard time?

I just don't know how to deal with this.

10-27-2013, 04:42 PM
The thing is your boss has made up his mind about you, and I see no way for you to change it except get exceptionally more degraded in your illness, or miracuralously better. Wasting your time and energy on people that repeatedly refuse to understand, or give you respect is futile. I assume that it's because he "knows" people with Lupus that actually makes the situation worse for you because they don't need service dogs, or the same requests you do, then it "must" not be necessary.
First, I'm sorry you're in this situation where you are met with misunderstanding, hostility, and negativity daily. That can't be good for your lupus.
I'm all for educating people, for promoting understanding and tolerance. Being a feminine lesbian, people don't assume I'm gay... I'm also invisible in that community. That means I have to come out all the time, to everyone, to risk rejection, speculation, and even crudeness. Because of my experience I think I have grown into the educator role. I welcome questions, because I feel if people underestand, they can be more accepting. It's also made me hardened. The folks that are just mean or dismissive I cut out of my life or ignore. That means relatives, co-workers, service people that show signs of distaste when "forced" to serve us (cruise steward wouldn't put our beds together, ect). I don't try to educate or tolerate these folks anymore. I bring these coming out experiences into my lupus expeience, and I only bring it up to you, because it probably taints my perspective, but hopefully it helps make it relatable. With lupus, I am also finding myself coming out again and again, because I don't look sick. Were I faced with someone like your boss he would have been cut off from anything except a professional relationship long before. (I'm not suggesting your relationship is un-professional, by any means, but that offices are friendly, and more enjoyable when people can share about their lives.) Because I can be fired for being gay I do not share that with the people at the office until they "find out" or I am comfortable enough with them on a non-professional level. Since your boss feels comfortable enough with you to tell you what he feels you medically "need", then it is not a purely professional relationship, even if it is only one sided on his side. That means if your office is uncomfortable, it's time to address it with your boss, with a witness. If you feel uncomfortable having that conversation, perhaps it's time to go to HR? This also means it's time to keep more of your medical concerns private and your workplace more professional/transactional. (I remember in one post you were trying to help co-workers understand.) that means going in to do your job, keeping to yourself, telling co-workers you'd "rather not discuss it", when they ask questions. It means HR being in your life a whole lot more, and the friendliness of your co-workers a whole lot less. Just keep in mind, HR is always there to protect the company (even if they are nice and act like your friend) not you. Also, it has been my experience in management that HR personnel do not keep things they learn in confidence.

The thing is there must be reasons you continue to go to this same job, and a reason you keep trying with these individuals. So why do you keep trying to help them understand when they keep showing you they don't care enough to do so? Your options, from what you've shared now and in the past, seem to be A) New job, B) Change to transactional/super professional personality at work, C) Continue as you do now and remain frustrated, D) Try harder to get them to understand, causing more issues, and potentially worse Lupus flairs. (Not in any particular ranking.)
Only you can decide what you're willing to put up with and for how long. You are not alone. You can not decide the way others feel or act toward you. You can decide how you feel, and how much you will stick around for or tolerate.
Good luck, and no matter what you do, take care of you first. (Which it sounds like you do, because you took the time to process your feelings about your service dog.) Change is always difficult, like the teething of an infant, but is necessary. Perhaps it is time for a change, which one(s) is up to you.

10-28-2013, 07:25 AM
i have had many, many jobs in my working career.
i have walked away from some of them ..... because they were not right for me.
sometimes it was difficult.
i was unemployed when i went bankrupt .... and lost everything.

but i was always true to me.

be true to you, and do not make excuses for anything.
that also means being true to your boss
that also means being true to your job
that also means being true to lupus.

find your balance in life ...... and be true to it.

if your job is making you sicker ....... treat it like any other illness
take appropriate medication.
either fix the job, .... or find a new one.

neither option is easy ..... but be true to you.

10-28-2013, 10:15 AM
I've stayed with this job for the following reasons: the paycheck. Even though I'm married, we have separate accounts and working here is still better than being back under husband's thumb. My financial independence is extremely important to me which is why I haven't quit the job. Also, the economy being what it is add the fact that I am *gasp* 50 years old, doesn't make for a lot of job prospects. BUT I am looking.
Working here is the lesser of the evils but not by much.

I'm trying to be true to myself as Steve says to do and I totally agree with him. Unfortunately, being true to myself for the moment won't pay the bills...

So, I am working on fixing the job. I'm making my work area as ergonomic as possible. I enlist assistance when needed. And yeah, beginning in January, Karma should be ready to accompany me to work. On a side note: last night I had a panic attack. Karma crawled into my lap and stayed there until it was over! His own idea. I love that dog!!