Afraid For My Job

[pastordari]

I need advice.

I had to take a month leave from work earlier this summer due to the increasing symptoms of POTS, etc.

While on that leave I traveled to Birmingham where my dx was confirmed and the doc made med changes which have helped greatly. However, there are several church members who don't believe there is anything wrong with me. They see me out in public, riding my bike occasionally, working, preaching every week and think all is well. Little do they know I am praying throughout the sermon to not keel over while in the pulpit. Nor do they know I have just downed lots of water and gatorade to make it through the service. Nor do they know I go to work and straight home to bed most days.

I have tried to educate people. I have distributed articles explaining POTS and dysautonomia. Some people are more understanding once seeing in black and white what I'm experiencing and how disabling it can be. Others look at me and say, "this is a crock of bull*!%&>".

My job has been threatened verbally.

People are nit-picking my performance and keeping careful track of what and when I am doing my tasks.

One even takes my pulse at the YMCA to confirm that nothing is wrong with me. This confirms to him I'm not sick because his pulse is higher than mine. He doesn't seem to figure into the equation that I am on three meds trying to stabalize my HR. It isn't going to increase in the same manner his does in response to exercise.

I'm so frustrated. I don't know how to make people understand a somewhat invisible illness.

If I had a bandage around my head or a cast on my leg people would be more understanding.

I'm tired of being questioned and doubted and told I'm a hypochondriac.

Some have suggested I should find a new job, but that doesn't feel right at this time. I can't run away from tough things. It probably wouldn't be much different in another location. I would just have to explain to a new congregation this unexplainable crazy illness.

Also, I hve trouble knowing if my fatigue is a manifestation of depression or of the ANS stuff. How can you differentiate?

My psychiatrist keeps increasing my effexor xr and wellbutrin, but I'm still tired, lethargic, and not too intrested in doing much other than lying in bed or sitting in front of the television. I really enjoy being busy normally, but not so much any more. I'm always tired and just want to be still.

Please advise:)

[Mrs. Burschman]

I'm sorry, Dari!

I don't have any great advice. I think what you're describing is really common with people with "invisible" illnesses. I figure I'm going to learn more about that, because I'm going to start attending the local CFIDS/FMS support group. It's the closest thing I can find to a POTS support group!

I just wanted you to know that I -- we -- understand what you're going through, and we're here for you.

Amy

[pat57]

I no longer expect people to understand, although if I am visibly weak, I tell them I have abnormally low blood pressure. They seem to understand that.

good luck

[flop]

Hi Dari,

have you tried www.butyoudontlooksick.com website ? There is a story on there the "spoon analogy" written by a college student with Lupus - whilst a different illness it does help explain chronic invisible symptoms. I wounder if you could use that to help you explain?

BUT you shouldn't have to be justifying/proving your illness either to collegues or in your case your congregation. I wonder how they would act if you were healthy and asking for prayer / understanding for someone else who had an invisible illness?

Flop

[Ernie]

Hi,

What kind of job do you do that you keep having to justify your illness to people?

[mattsmum]

Sorry to hear you are going through this. I had the same problem with my job. If you can provide simple letters from your specialist or doctor they should respect that a professional has provided medical opinion that shouldn't be questioned! Or if things are getting that dicey get your doctor to call your work personally.

And just on another note good on you for exercising and going to church I have long stopped those things because POTS was becoming such a problem I stopped enjoying it.

[pastordari]

Thanks for the responses.

Thank for the encouragement and the ideas.

I think I will get a letter/note from the doc in Birmingham. They were very helpful and understanding.

She would write a letter or something to help demystify the situation. She sent me home with her latest article on dysautonomia and MVP. I've been spreading it around, but people read it and continue their narrow views. I am amazed how someone can read an article that explains exactly what is going on with my body and continue to think I'm trying to "pull the wool over their eyes".

Flop: I was not aware of the web-site. I'll check it out . . . thanks.

Ernie: I am the pastor of a small church in a rural area. Church members are always full of "good advice" and feel free to coach me on how to live my life. There is a small cadre of members who do not believe anything is wrong with me and they are quite vocal about it. These same people are the ones who have on more than one occasion have threatened my job if I didn't work harder or return to full activity level. You would think the church would be understanding, but I'm not finding it to be the case. However, I will quickly add that several people have been very understanding, thankfully.

matsmum: Thanks for the praise, but I HAVE to go to church. I'm the pastor.

As for exercise, I am fading fast. I was riding 50 miles a week just a few months ago and now maybe 10. Following the ride I end up so exhausted it really isn't worth the effort. If I weren't riding with someone, I would quit. Peer pressure keeps me going!!!

Thanks again. I think you have helped me have the gumption to go on another day.

Dari

[MightyMouse]

Dari, Have you thought about being a bit bold and speaking about it during an upcoming sermon? I think it very non-compassionate for folks to be assuming you're not ill just because you don't look sick... I'm not a Christian, but know enough to come to the conclusion that it's very much not in line with your beliefs to be jumping to conclusions that you're anything other than who you say you are-- a person with a disability. Why would you want to be one if you had a choice? I don't think it's selfish at all to talk about your own struggles, even if just briefly to say it's been disconcerting to have people actually trying to "test" you, extra-scrutinize your work. I can't believe someone would actually take your heart rate or ask to do so unless he/she is a doc or nurse or worried that you're in a medical crisis and in need of help.

Maybe you could tie it into a discussion about what it means to walk in another's shoes and how much more you appreciate that adage now that you've been ill? Maybe you could actually take spoons with you and give/take them to members of your group during your discussion (read the spoon analogy the flop suggested--it's actually reprinted here on the forum somewhere if you search for it). Or you could just hold the spoons yourself, and drop them next to you as you complete your morning duties...leaving you with one or none at the end? Just a thought of a visual way to help members stop being so closed minded.

Just my ramblings... I've never found it useful to let stuff like you've got going on float for long "underground"... of course, that's also given me the label of being "confrontational" at times, but I'd rather see the issue up front than have to ruminate over it for time and waste what little "spoons" i've got to go around. You might also show that you get extra spoons to start the day if you 1) have slept well, 2) taken your meds 3) have eaten well, 4) not gone into spoon debt in the days before... etc.

Nina

[pastordari]

Wow! Thanks MightyMouse.

The sermon idea is a great one. I am currently working on a sermon about Jesus healing a woman who was "bent over" for 18 years. I might be able to expand the exploration of dibalitating illness and disability with this sermon, this week! It is an exciting thought. I like the "walking in another's shoes" analogy as well. That will fit with the scripture, I think. Ah! I'm so excited. At least if I get fired I will have had my say!!

You are right about not letting things stay under the radar, so to speak. I tend to bring things out in the open. How can they be dealt with otherwise? This congregation is Southern and really adept at smilling at you while stabbing you in the back. All messiness and issues are swept under the rug. They don't like being confronted with reality. However, my role as pastor is to lead the flock to new spiritual depth and bringing out the dysfunction is one way of doing that.

Thank you SO much. I have such a feeling of freeness and hope.

My body feels lighter and the future a little brighter.

I guess I was feeling more hopless than I had realized.

Dari

[Sunfish]

hi dari -

i missed your original post when i was in the hospital, but as i'm going back through them just wanted to check in with you to see if you ended up doing the sermon and/or otherwise talking with your congregation. i thought nina/ mightymouse's ideas were great & could envision how you could fit them in with the sermon you were already working on.

while certainly not the same situation...largely b/c i wasn't the pastor...i have had less-than-positive experiences (one in particular) at a church wherein i was very involved (leadership positions, music, etc) and my health issues/ limitations were called into question. it was horribly painful and while it was WAY more complicated than my one sentence summary i know how tough it can be to have a place that one would think/ hope to be most supportive become the opposite. i can imagine it is even more so when it is also your place of work.

all the best,

melissa

[preacherswife]

Dari,

How are things going? I'm new here, so I didn't see your post when you first wrote it.

My husband is a pastor, so I'm a pastor's wife with an invisible illness. They see me taking care of my kids and filling in with the piano playing, singing in the choir, leading the drama team, pitching in at whatever because anything that needs doing that nobody else wants to do gets handed to the pastor's wife, and they think there's nothing wrong with me. Like you, I take meds to be able to function. In addition, I'm 27 years old, so they think there can't POSSIBLY be anything "really" wrong with me since I'm so young. I don't know where I'm going with all this other than, I completely understand what it means to have POTS in the fishbowl.

[lthomas521]

In addition to the old "invisible illness" problem, you may be dealing with people who think that illness is the result of sin. They may feel that if you were really on good terms with the Almighty, then you would be healed. Have you preached anything about Job lately? In particular, have you pointed out how wrong and annoying "Job's comforters" were?

[cardiactec]

Dari, so sorry you are going through all this.....I pray God give you wisdom in what to communicate to both your congregation and others you come in contact with who "doubt" your illness. you have an ever present help in time of need, and He loves you -- and though people, yes, even christians unfortunately (we're not perfect) may doubt you or judge you, God will always uplift you, hold you, and believe you and IN you.

This life is tough, but we are more than conquerers - be blessed.

cardiactec.

[pastordari]

Oh! You guys are great.

Thanks for the understandng and encouragement.

Sunfish- I did work Nina's ideas into my sermon somewhat unobtrusively. I don't know if they really heard me, but I said it. Perhaps the SPirit willl eventually turn some hardened hearts softer toward the idea that I really am sick. The openly hostile and unbelieving ones have quieted down for now (thank you Jesus!), but the trust level is still wavering.

preacherswife - clearly, I wrote the other message to you prior to reading this post. I KNOW you understand the "fishbowl" and invisible illness. You are right about people thinking everything is OK because you show up and get the job done. It never occurs to people what you or I might have to go through and struggle with in order to show up and do our jobs. Plus, the age. I am significantly older than you, 41, but still pretty young for people to think about a chronic life altering illness going on.

lthomas - hadn't thought of the "sin" thing. You are right, something to think about. For centuries people thought illness was brought on by evil deeds or sin or the wrath of God. Maybe my little congregation has some of this old thinking imbedded in their minds.

All this has been interesting to think about. I just never expected anyone to question the veracity of my illness. I'm the pastor afterall, why would they think I am being dishonest? Not that pastor's are above sin or mistakes, but I don't make it a habit to lie and certainly not to my congregation.

Ugh! It just makes me mad. Mostly, though, I am disappointed that these people I love and care for everyday of my life have "turned" on me so quickly!

Thanks for understanding and taking the time to respond!

Dari

[Becca_7706]

Dari,

I've had issues with my church too (though I'm not a pastor) and work as well. I just wanted to make a suggestion for why they appear to have 'turned on you'? People don't like to think of pastors as being fallible human beings - they should but they don't. It is possible that is why they are not understanding.

Although that doesn't explain why you are having such hassle from the people who you are working for.

Becca.

[pastordari]

Becca, You are probably on to something!

Pastors are often expected to be perfect - inhuman even.

People are amazed at the humanly things I do from time to time.

How dare I go and get sick!

Of course, one fear may be that I will not be able to meet their needs when they are sick or in need.

I certainly expected more from this usually loving congregation, but met surprise.

Dari

[Becca_7706]

To be honest Dari, I think that it is because they think you couldn't be there for them - that was what occured to me. I'm not saying that you can't or anything but perhaps they feel less able to rely on you? I wonder if they are even doing it subconsiously - I mean the assumption is when people have problems of their own you don't want to talk to them about yours because of making things worse for them, I'm not saying those people need your help right now but perhaps they have always taken comfort that you would always be there 24 hrs a day without fail EVER and are now being shown an alternative to that and it scares them? This happened to me this week, a friend was having issues with her faith (which I've had myself) and eventually confided in me beginning with 'this is nothing compared to what is happening to you...' and it took a long time to convince her it was fine to talk to me, that I didn't mind.

Could you try working that into a sermon, that you are *shock* *horror* human too - I remember going to a sermon a couple of years ago along those lines - I can't remember the scripture though which is a pity. It worked well (I knew the person giving the sermon well and he said it helped him and his wife immensley as they had a sick child and quite unintentionally people had stopped asking for their help). It also, in my opinion brings you closer to your congregation - personally I find it more of a comfort when I know the person preaching to me is human too and has problems as much as anyone else.

What I am trying to say, possibly badly is that they are still a loving congregation just one who are needing to accept that their pastor is not the superhuman they once thought, once they realise you have an illness that comes and goes and that you are still the same old pastor you always were they'll come round you'll see.

On a side note I disagree with the whole sin makes you ill theory anyway, but have come across many people who have asked me what I did to deserve this. In one of my more flippant moments I said I was Hitlers Mother in a past life - I wouldn't recommend saying that though, one person took me seriously

Becca

Edited September 21, 2007 by flop
Quote removed

[Eli6596]

I am so sorry that you are being tested like this. It is a burden that none of us deserves. People can be so two faced. They pray to God and want to follow what God teaches, but do not apply it in real life. As a physician I was most callously treated by my fellow physician colleagues who whould roll their eyes when I would lie down between seeing patients. One of my colleagues wanted to give me orders in relationship to my healthcare even though he was NOT my doctor. I see similar behavior in the person who took your pulse.

After being disabled with POTS for 6 years. I have learned that some people will NEVER listen to reason. THose people could talk one on one to your doctor and still have cold doubting hearts. It sounds like some people in your congregation are not rational. I think it is a waste of energy to focus on those people. Forgive them for they know not what they do. I was never an overly religious person but I have grown closer to religion due to my illness. I have prayed to God to please help me forgive those people who have persecuted me. In those moments of prayer, I find peace. I pray for God to help THEM even though anger has overwhelmed me. I would tell those people that you forgive them and pray for them.

I would set boundaries. It is an arrogant violation for someone to take your pulse and judge you ignorantly. I have noticed that people doubt me less when I keep my explanations of my illness simple and confident. I don't beg them to understand. I just say that I have a cardiac illness so that I can pass out if I stand up too long. I also say that the disease causes extreme fatigue. I cannot do everything that I want physically.

You are in a unique position to help them be better people, closer to God. I like the idea of you spreading enlightment through your sermons which can help you AND the section of ignorants in your congregation. I confess that I have not studied the bible but there must be something in there about worshipping God but not really following his preachings outside the doors of the church building. How about "Judge not lest you be judged" There must be a gold mine of lines in the bible that could teach these people to be more tolerant!

I would also keep positive and focus on the wonderful people who do support you. God knows that you are ill. Your doctors know that you are ill. God knows how hard it is to stand during a sermon and would understand if you sat on a stool to preach. I sit down in mass instead of standing every few minutes with the congregation. I used to worry about the looks that I would get. My husband then told me that GOD knows why I sit in mass, and that the opinion of the others should not matter to me.

Karyn

[Eli6596]

Sorry that I am going on and on, but these posts really hit home. Becca, your point is really good, and I just read it after I posted my post. Yes, when someone is ill, they immediately think how it will impact THEM. Lots of older people have illness, and you are in a unique position to be able to help them even though you are young. I am 42 too, so you ARE young They will know that you understand if you say, "It is hard when your body does not do what your mind wants it to do"

When I share with my patients that I have a chronic cardiac illness, it brings me closer to my patients. They really like that I KNOW what they go through. I understand how overdoing it makes you pay the price. I understand how employers can discriminate against you. I understand how it feels to take handfulls of pills for breakfast. It has brought me closer to my patients and made me a much better neurologist than I would have EVER been without this illness. Good things CAN come out of hardship. I fully understand this. I have not just read it in a book somewhere. You can use your illness to be a better pastor than some young wipper snapper without any problem at all who cannot REALLY, truely understand.

Sorry to go on and on. My husband and kids are visiting the in-laws, so I finally had time to post instead of just reading the posts.

Karyn

[Becca_7706]

Karyn,

I work in a hospital but not as a dr or nurse. I have several friends on the staff who are drs who are really interested in my conditions - I'm a handy education opportunity I remember one who suffered with epilepsy saying it helps her a lot when seeing patients because she understands. When I was in London at the beginning of July one the nurse who was washing me (I've problems with my hands as well as dys issues) when I said how embarrassed I was because of being young said she had had a chronic brain virus for several years before qualifying (she was fixed in the hospital she now works at) and she said it meant she saw patients in a different light.

Becca

When I share with my patients that I have a chronic cardiac illness, it brings me closer to my patients.

[Eli6596]

Hi Becca,

What you said illustrates how many people have problems that we don't even imagine. I thank God that I can work. Although it exhausts me, I see many people who struggle with the same kind of issues as us, just in different forms. It feels good to pass along some coping techniques/attitudes that I have learned the hard way. You are passing along information about your illness which in turn will help those medical professionals to better recognize a patient with your illness. There can be purpose to our illness.

Karyn