Caressing of the Soul
or
Fateful Hours for Patients
by Helga Naujoks

During the first weeks of my vasculitis-disease anxiety, uncertainty and depressing thoughts prevailed such as: "What kind of illness is this actually? When will they be able to put a diagnosis to it? What will the therapy be like?" There were so many questions...
Body, intellect and soul were therefore especially grateful for any kind of aid, be it medicines, conversations to cheer me up or soothing and calming words for the soul.

I have put down some of the statements of the treating physicians which were ment to comfort me or to build me up: "You do have thorns - we do not know, however, whether you are really a rose ." (The diagnosis was difficult!)

"We have slowed down the vehicle, but have not yet brough it to standstill." (which meant: a first successes in the therapy seemed to
be visible.)

"You are a pin in the haystack. Where are we supposed to look?" (I am glad that I have found myself in the meantime )

"You are actually a rarity!" (Who collects rarities of "homo sapiens"?)

Is anybody going to participate?
As I was propably an unusually curious vasculitis-patient, who had fallen ill just a few months earlier, I was allowed to participate in a session of the "Working Committee Vasculitis" of the "Vasculitis-Support-Group" under the roof of the Deutsche Rheuma-Liga in Bad Bramstedt Clinic. The occasion was quite exciting for me and tore me out of a lethargic mood, into which probably many of us easily fall. Many of us gladly accept all the help being offered, however, patients rarely offer to participate actively themselves, for example by writing a small article for our annual "Newsletter".
From the very beginning I noticed: important work is being done, ideas were collected, thoughts and ideas each member had gathered in that last week were discussed; proposals were abandoned, discussed anew, rejected, improved. It became obvious that these people are devotedly engaged in a vital job (on an honorary basis, of course!), fully devoted and ready to sacrifice leisure-time; members happily put up with travelling 100 km and more, with spending an entire day in order to support us patients.
That afternoon the main topic was the "4th Nationwide Conference of 1998 of the Vasculitis-Support-Group"
- where should it be held? (There are other places besides Bad Bramstedt!)
- Who could arrange for it at the other place? (Where
are other devoted regional support-groups?)
- Where does one find physicians who are ready to give a report?
Naturally the question was being discussed: what do we have to do if the conference takes place in Bad Bramstedt again? We were not able do discuss it thoroughly to the end.

After a one-hour's car drive, four hours of intense listening and "being electrified" at the same time one thing became clear to me: "Something extremely important is being done here! And I would like to participate!"
Though the number of members in the team must be limited: does not each of us have the possibility of contributing for example by writing little reports for the "Newsletter"?
Is not every patient interested in reading about the experience of co-patients?
How do I cope with my illness in everyday life?
- "Illness and occupation" or "Illness and Family", "Vasculitis and DIet" - what kind of experiences have I make?
What kind of aid can I expect by participating in "my" regional support-group?
-There are as many questions as there are patients and thus many differentquestions and experiences come together.
-Should we not think of our co-patients as well who may learn from our own experiences or whom our own stories could give some comfort and support? I at any rate am excitedly waiting for the next issue of our newsletter and for a signal of whether you or you or you will report something! Finally, I can say today after three months have passed : At the next session of the team I did appear, not only for sniffing, but rather as a member of the team cooperating on all the questions one may stumble over concerning Vasculitis. They elected me secretary. My next intention is, to establish a local support-group. Next to medical provision, it can be an important support for us patients, but also for our family-members.

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