Today is a sad day indeed - but before I explain why, I wish for everyone to know I am not bashing anyone here on my blog. I am simply stating my thoughts and feelings about a situation that has occurred on the ITSAN forums over the last few days. I am NOT encouraging anyone to remove themselves from ITSAN by any means. Many people will wonder why I am no longer a member and this post is an explanation from my point of view.
As of today I am no longer a member of the ITSAN forums - and I am deeply saddened by this. It was MY decision to leave however I did so after I was given a final warning for undermining the ITSAN administrators. I am perplexed why they thought I was undermining anyone when I was actually trying to help (this is my opinion). A member had made a plea for donations explaining that donations were embarrassing and pitifully low. I made a few comments explaining that some people may have financial hardships due to missing work from TSW. I explained my own situation in which I have missed a total of 6 years of work due to my worsening eczema, depleted adrenals, and liver damage (from topical steroids). I was trying to explain that some people may find the pleas insensitive given how much pain many people are in. This statement was made:
"We get a constant, steady
stream of comments about how much a blessing this site is and how important
ITSAN's work is, yet most of these commenters don't seem to want to pay
anything for that benefit"
I find this hard to read given that it is not that people do not want to give - it is that they truly cannot! I am one of those who cannot give at this time yet I had wanted to. So I take offense to statements like this and others where people say people buy all sorts of remedies in hopes it will help them heal yet can't find $5 to give to ITSAN. Do you ever think that maybe people are borrowing that money in hopes of finding ANYTHING to give them relief from such torment? I also take offense to people calling me a taker...simply not true. I have given lots of time supporting others emotionally and answering countless emails. I have gone on a mission to directly help those affected by TSW to help ease their pain. So I am not only hurt, but truly mystified by this situation.
In any organization, growth can only happen if the leaders of the organization continuously assess the path they are on - that includes acknowledging mistakes and errors and correcting them. I find it difficult to swallow that an organization that wants to grow will shut out any and all people who question them or give advice that may actually help the organization. This is detrimental in my opinion and could be a big reason you will see such pitiful donations. You may also consider that allowing members who did give money to call other people names is just not good for business. Having a member say that most forum members are leaches and scum is truly disheartening as most members are just struggling to survive - to be called names is offensive and hurtful and not necessary.
But instead of acknowledging any wrong on the admin's side or the one's donating - the posts are deleted and everyone pretends like all is good. This is again detrimental in my opinion. Kelly Palace had remarked on the plea for donations in a very kind and gentle way - a way that I found productive and would have probably brought in much more donations if she had created the post herself. She has done so much for those suffering with TSW and I am deeply saddened to leave her and others. But if they continue to allow administrators to make others feel guilty for not donating, and they allow admins to essentially bully those actually trying to help, then I can no longer support such an organization.
I will instead continue to spread the word about TSW in the medical community and via Facebook and this blog. I will continue to search for answers regarding the possible correlation between the MTHFR gene mutation and TSW. I will continue to support my fellow warriors on their individual blogs.
I have never come across a non-profit organization that tries to make people feel guilty for not giving them money. My husband and I supported a non-profit organization plus a few ministries prior to me going through TSW. We donated well over $200 per month just to the one organization. My lost income has found us living paycheck to paycheck with my husband required to work overtime to make ends meet. Our kids have dropped all activities and we no longer eat out. We had planned to move to Kentucky to start a small farm - all of that is no longer an option until I am back to work on a regular basis. I am not complaining - simply stating a reality - one in which many of those suffering find themselves. It is what it is and we trudge through it. Once I was in the clear and we were back on our feet, I had planned to donate that $200 to ITSAN every month because of how grateful I am for their work. Yet I am left with a sour taste in my mouth for the way the organization is allowed to be run.
If anyone reading this starts thinking maybe they too should leave ITSAN - I would say don't - you have a lot of support from the members there - if you are one giving a lot of emotional support - then others need you there. I did not make this decision hastily. I had left the forums a few times in the past for similar reasons. This was basically the straw that broke the camel's back for me. I had seen ITSAN make a lot of positive changes and had hoped something like this would not happen. Those that know me well and work with me know that I am a reasonable, rational person. I dislike arguments and do my utmost to be diplomatic and peaceful. I am disturbed by all that has taken place but I urge those still supporting ITSAN to please continue to do so - they have a message that needs to get out there. I just hope that changes can be made at some point that will help them grow bigger and better.