Adjusting to Change and Loss When Living with Chronic Illness or Disability

Sue Kuenzi

[HOST_Carolann] I think we will get started now. Welcome everyone! Our guest for today is Sue Kuenzi.
[HOST_Carolann] She will talk to us about adjusting to change or loss when suffering chronic illness or disability.
[HOST_Carolann] Sue is the founder of Hope Beyond Words, which provides counselling, training and rehabilitation resources. She is also a writer and photographer.
Sharon> Hi. I'm new. Just found the site yesterday.
[HOST_Carolann] There is a handout prepared and you can get your copy at www.restministries.org/CHAT/handout_kuenzi.pdf
[HOST_Carolann] Welcome to our guest Sue and I am glad you are here. I will turn our time over to you.
GUEST_SUE> Thanks, Carolann.
GUEST_SUE> I'm going to spend a little time sharing some information about the topic of change and loss, and then I'd love to have an open discussion.
GUEST_SUE> As I go over some concepts, I'll be asking you to think about some questions. If you'd consider saving your response til a little later, that would be helpful.
GUEST_SUE> We'll have plenty of time to interact after the initial part, but feel free to ask a question any time if you'd like.
GUEST_SUE> Having lived with multiple sclerosis for a long time, I understand how much health issues can impact our lives. I invite you to think about your own life.
GUEST_SUE> Consider some of the ways you've needed to adapt to change or loss due to health issues. Disability or serious health issues tend to shatter our illusion of control.
GUEST_SUE> Would any of you like to comment briefly on the changes or losses you have experiences?
GUEST_SUE> sorry, I have vision issues, so might get a little mixed up now and then.
[HOST_Carolann] no problem - take your time Sue
GUEST_SUE> We learn to depend on God, and thankfully He understands our sorrows, and He knows our needs. Have you ever allowed yourself to grieve the losses?
GUEST_SUE> Our culture idolizes control, so we often don't feel we have permission to talk about the losses and changes freely. However, illness or disability often affects many aspects of our lives.
GUEST_SUE> When we don't acknowledge losses and changes, this becomes a source of stress. I invite you to consider some things about your own losses and changes
GUEST_SUE> When we honestly face these things and allow ourselves to grieve, we are ultimately able to reinvest energy in our lives, and to live with renewed purpose and meaning.
GUEST_SUE> Please consider the following "Tasks of Grieving" with me as they may relate to your own life. These tasks were originally developed by J. William Worden.
GUEST_SUE> o Task One: Accepting that the loss is a reality o Task Two: Entering into the emotions of grief
GUEST_SUE> o Task Three: Acquiring new skills o Task Four: Reinvesting our energy in new ways
GUEST_SUE> Let's take a look at Task One together. Just interject if you have a question or would like me to slow down.
GUEST_SUE> Consider: What changes and losses have you experienced in your life as a result of your health issues or disability?
Ron> Living with Parkinsons I have to take my medication three times a day so that i am able to move and don't freeze up and become like an ironing board
GUEST_SUE> I know that Parkinson's can be very difficult. Since I have MS, I understand some neurological issues. Task One involves accepting the loss is a reality.
GUEST_SUE> Our culture tends to encourage us to minimize.
[HOST_Carolann] I can no longer work so have had to adjust to a stay at home lifestyle
GUEST_SUE> Yes, that's a major adjustment.
Alice> Giving up my morning walks -- giving up many family functions -- right now my mother in law is in the hospital with a stoke, and i want to be with her so much -- but i just can't
GUEST_SUE> That's especially hard I think.
GUEST_SUE> Consider: Are there some dreams that have been impacted by your health or limitations? Have relationships been impacted?
Sharon> I can so relate, Carolann.
sueraec> I cannot work anymore. Its hard to find purpose when housebound...I was always so active...
[HOST_Carolann] social life goes downhill since can't get out much to do stuff
GUEST_SUE> Part of this process is learning to redefine our identities and find meaning in other ways. But I relate to your comments.
kvp> I had to stop driving anything other than short distances which limits where I can go
GUEST_SUE> I also have a lot of driving limitations. I miss the freedom, too.
[HOST_Carolann] yes the independence
GUEST_SUE> Sometimes life looks radically different than what we'd hoped or envisioned. Sometimes life looks radically different than what we'd hoped or envisioned.
sueraec> I miss the freedom to drive and be active outside the home.
Louise> Not being able to drive, being so dependent on everyone else.
Susan> same here............I had to quit work and I don't think I've ever totally gotten over having to give up my teaching career.........I always thought I'd get better some day and things would be "normal" again
Sharon> Freedom to be alone is a hard one for me. I have to have too much help.
GUEST_SUE> Feeling that we have to depend on others is very hard.
GUEST_SUE> Those were good examples. Let's take a look at Task Two.
GUEST_SUE> That's about entering into the emotions of grief.
GUEST_SUE> The purpose o f grief work is not to "get over it," but to regain balance in our lives.
kvp> \knowing that the mind was able to cope with things but the body wasn't was hard to come to terms with
GUEST_SUE> Yes, that can be really hard.
GUEST_SUE> Grief tends to come in waves, and changes that represent loss may evoke these waves.
Dana> Trying to cope with what a Mom with my limitations does versus a Mom who is well. I am sad because I think my young children suffer because of my illness.
Sharon> It's hard for my mom to watch that, on top of watching me be in pain.
GUEST_SUE> So when you struggle with these things, do you allow yourself to process the emotions, too?
GUEST_SUE> As you consider your health issues or disability and associated losses, what emotions do you feel?
sueraec> unworthiness
Sharon> uselessness, feeling of shame
Ron> frustration
[HOST_Carolann] discouragement
Susan> a burden to my family
Louise> fear of the future
GUEST_SUE> those are common feelings. We need to remember God honors our emotions. He created us.
[HOST_Carolann] isolation
Sharon> also confusion- what should I feel? Is what I feel okay?
kvp> purposeless
Alice> Sad -- i cry sometimes
lori> I wonder what my purpose is in this life with all my limitations
GUEST_SUE> Thanks for your openness. Sharon, your question is important.
GUEST_SUE> We just should feel what we fell. Whatever you feel is okay.
kvp> I also feel shame that i can't do what i once did
GUEST_SUE> Lori's comment is really important as well--we often feel a desire to know our purpose. We want to find meaning in our suffering and limitations.
sueraec> Guilt is a hard one for me to deal with.
Sharon> What about when others have a problem with your expressing those emotions and worry that the sadness is slipping into depression?
Alice> Guilt is a hard one for me to overcome
GUEST_SUE> Can we slow down for a second.
[HOST_Carolann] good idea!
GUEST_SUE> Thanks. I'd like to respond to a few of the comments.
GUEST_SUE> Sueraec commented that she feels guilty. Others have mentioned that, too.
GUEST_SUE> When we place expectations on ourselves, or feel others have expectations, we may feel guilty.
GUEST_SUE> We need to remember that we did not ask for these limitations or health issues.
GUEST_SUE> It's part of a fallen world, and guilt, while a natural feeling, can be reframed. We need to consider our identity in Christ.
GUEST_SUE> He loves us as we are, whether we can "perform" or not.
GUEST_SUE> Also, Sharon asked a great question. Sometimes others are uncomfortable with our sadness or emotions.
GUEST_SUE> Not everyone is equipped to handle the intense grief we may need to express.
GUEST_SUE> Also, we need to keep an eye on things, and perhaps see a Christian counselor or someone who can help us evaluate whether we're becoming depressed.
GUEST_SUE> I think the most powerful verse in the Bible is the one that says, "Jesus wept." He understands our sorrows. He will comfort and sustain you.
GUEST_SUE> Comments?
Alice> We learned in a chat before Christmas that we usually expect more of our selves than others do. That helped me a lot
GUEST_SUE> That's a very good point.
[HOST_Carolann] so if people are uncomfortable with our grief, we need to just let them be that way? We shouldn't feel we need to help them deal with our grief?
GUEST_SUE> Also we need to learn to communicate. Many limitations aren't visible.
Sharon> I guess I feel frustrated because I don't often express my 'negative' feelings. When I do it is hard for others. I appreciate what you said Sue.
GUEST_SUE> Carolann, that's a good point.
Dana> How do you cope with the guilt, in Christ, when you are guilty because you have trouble meeting the needs of your young children? They just don't understand very well.
GUEST_SUE> Part of healthy boundaries is understanding we all have our own emotions to deal with.
GUEST_SUE> Can I respond to Sharon first, and then Dana?
kvp> It is hard sometimes to get out of the self-condemning mindset .... particularly if you have no means of positive affirmation around
Louise> Re: guilt. Yes God loves us as we are, but it is still hard to watch your family overdoing because of all you can no longer do.
[HOST_Carolann] yes please, everyone just wait with further questions
GUEST_SUE> I can't read quite this fast due to MS.
GUEST_SUE> Thanks :)
GUEST_SUE> Our frustrations often build if we don't talk about what's changed or how we feel about losses.
GUEST_SUE> Dana, you bring up a very valid point.
GUEST_SUE> Kids have needs. It's sad when we aren't able to meet all of them the way we hope or the way they expect.
GUEST_SUE> I wonder if you might think of age appropriate ways to help them understand limitations.
GUEST_SUE> Then, would there be ways to consider how their needs might get met when you're not able?
GUEST_SUE> We need to remember there is no condemnation in Christ Jesus.
GUEST_SUE> Louise echoed the concern. There are many practical issues that come up. It's another area of losses when others have to do more to compensate for our limitations.
sueraec> Sue, I rejoice in the fact that Jesus accepts me "as is" but my brothers don't and can make my life miserable.
GUEST_SUE> Are your brothers your age?
sueraec> No, they are younger with families
GUEST_SUE> Okay. Sometimes it is really hard.
Dana> thank you, Sue. I have 24 hour help in place for their needs to be met. I just have a hard time when I can't meet their needs--which is pretty much what several of the guests have expressed. A grieving over the losses and learning to cope even when the losses involve others. thank you sue.
sueraec> My Dad is in a nursing home 5 1/2 hrs one way away from me and they make me feel so guilty when I don't visit him often.
GUEST_SUE> That must be really difficult.
GUEST_SUE> Life has a lot of demands. I often feel really sad when I can't do what I would have done in good health to help family.
sueraec> Yes, due to an injury I can't travel
GUEST_SUE> Perhaps it comes back to depending more fully on Christ in some ways.
GUEST_SUE> Task Three is about acquiring new skills and relates to our discussion.
GUEST_SUE> As you think about the losses and changes you've experienced and work through some of the emotions you feel, you'll find opportunities to develop new skills.
GUEST_SUE> Learning to develop new relationships or honestly share about your feelings might be some examples.
GUEST_SUE> Learning to express your limitations clearly to others and then let go of guilt by His grace might be another.
GUEST_SUE> Or new skills might include learning to use a power wheelchair or assistive technology, or how to best relate to a caregiver.
GUEST_SUE> I know that MS has challenged me in many ways.
GUEST_SUE> God has been very gracious in helping me to continue to grow and to find strength and hope in Him.
holly> I already have four chronic illnesses and was just handed a new diagnosis osteoarthritis somehow i just get started in how to accept this one
GUEST_SUE> He's helped me to know my identity is not in what I can or can't do, but that it is secure in Christ Jesus.
GUEST_SUE> Holly,
Sharon> I am very nervous because of my pain, and some of the side effects of my medication. It's really hard to meet new people. This is the best one I've found. Noise bothers me. Can't hear you typing. :)
GUEST_SUE> That's really rough.
GUEST_SUE> It's neat that this mode of communication works for you, Sharon.
holly> yes
GUEST_SUE> Sometimes we just wonder how we can handle one more thing.
Ron> I have found hope in helping others, like in this chat room
GUEST_SUE> Great example, Ron.
Alice> We can't - but "Christ in us" can
GUEST_SUE> Yes.
GUEST_SUE> It helps to remember that in this fallen world, we have many trials.
GUEST_SUE> But our hope is in eternity.
Alice> Amen!
GUEST_SUE> Do some of you have friends you can share openly with?
holly> yes I have very close friends
GUEST_SUE> I think that can be very helpful, but we need to be sensitive about timing.
Alice> Yes -- one i met on this chat site, actually.
GUEST_SUE> Great.
Sharon> I have some. Some have gotten so overwhelmed I've lost them.
Ron> yes, I have a group who regularly look out for me
GUEST_SUE> That's a really good point. People often feel very overloaded in this world.
[HOST_Carolann] I have a couple great "cyber" friends too that I can share with
GUEST_SUE> Nice.
GUEST_SUE> I think that we have one Friend who will never be overwhelmed.
Sharon> yes!
GUEST_SUE> And Christ's love through others helps us a lot, too.
GUEST_SUE> Can I talk just a bit about task four, reinvesting your energy in life?
[HOST_Carolann] yes please continue Sue
sueraec> Yes, Sue, I think my brothers/others just don't want to deal with my problems because they have enough of their own
GUEST_SUE> Good point, sueraec.
[HOST_Carolann] please hold your questions for when Sue has finished this next section
GUEST_SUE> It's often not that people don't care.
GUEST_SUE> As you work through the tasks of grieving, you'll ultimately be able to put your heart into life again more fully.
Alice> I facilitate a HopeKeeepers Group. So, i usually am the one who gets overwhelmed with others needs. That is when the blessing comes of being able to share with them that their only HOPE is in Christ
GUEST_SUE> Nice comment, Alice. We need to continually remember that Christ has offered to bear our burdens, and we aren't asked to carry the load for others. Just to care.
GUEST_SUE> Consider how you can reinvest your energy in life.
GUEST_SUE> Think about what gives your life purpose and meaning
GUEST_SUE> This last task is something that is important to remember--God gives our lives purpose and meaning in many ways.
GUEST_SUE> Although I would rather not live with MS, I have time to visit with you today because I do, and I relate to your struggles.
GUEST_SUE> God often redeems our struggles by allowing us to have compassion for others.
GUEST_SUE> Now, let's open it up for discussion. As you think about the tasks of grieving or any other aspect of dealing with change and loss, do you have some questions?
sueraec> I've just started sending out birthday & anniversary cards to my fellow church members and it blesses me a lot
GUEST_SUE> Nice idea, sueraec.
Ron> serving Christ, all tasks done in His name are worship
Alice> I have heard it said that "God does not waste our suffering.
GUEST_SUE> yes
Sharon> I think that sometimes our struggles give us a greater credibility with others when we share Christ, or they are hurting in some way.
GUEST_SUE> definitely
holly> I think what I need is to talk to people who are in the same place as me who are christians. How do I do that.
GUEST_SUE> And, I am sure my spiritual life is far deeper because of challenges.
Sharon> me, too
GUEST_SUE> Holly, good question. Do you have a church family at all?
holly> yes I do
GUEST_SUE> When you say "in the same place" do you mean with similar health challenges?
holly> yes
Alice> HopeKeepers is a great tool for this, Holly. Find out if there is one near you.
GUEST_SUE> I agree. Some towns don't have them yet, though.
GUEST_SUE> We all long to be understood.
sueraec> Isn't there a Hope Keepers Group that meet on line?
[HOST_Carolann] Holly there are 3 on line chat times where you can interact with people in the chat room - there is a Hopekeepers study and there is a social chatting time
holly> How do I find out if there is one in my area
Alice> Yes, Carolann
GUEST_SUE> I know I'm rather visual, so sometimes I need time face to face, too.
Alice> You can find one by going on the Rest Ministries site and looking under HopeKeepers.
holly> can you tell me the chat times?
Ron> sometimes you just need a big hug!
GUEST_SUE> Some of you expressed feelings of isolation. I try to also remember that praying with others helps.
Sharon> yes
holly> amen
GUEST_SUE> I agree about the hugs!
GUEST_SUE> It's kind of an adventure to honestly acknowledge our deepest needs, and then ask the Lord how He might wish to meet those.
sueraec> I was sharing with another Fibro-mite yesterday and we discussing the need for more classes that feed a woman's need. She suggested that since I can't be very mobile right now that I hold a small group meeting in my home!! I never thought about that idea before
GUEST_SUE> I have found that to be wonderful.
GUEST_SUE> I invited any women from my church with chronic health issues to join in a Bible Study last year. The bonds we developed were great.
GUEST_SUE> Many times God challenges us to grow and to think of ways to bless others. In turn, He meets our needs, too.
GUEST_SUE> More thoughts?
Louise> If you wonder if your life has purpose and meaning - just think of those who would be devastated if you died - they are why you are here, in large part. That thought has seen me through many a dark time.
GUEST_SUE> Very good.
GUEST_SUE> Even when illness is very challenging, we can pray.
Alice> I read of a lady who held a Bible Study from a hospital bed in her living room
GUEST_SUE> When I worked in China, I met with women from my bed when I became very ill.
GUEST_SUE> Those were the most precious times.
sueraec> Yes, we can become mighty "Prayer Warriors"!
Alice> I think that is so great!
GUEST_SUE> To know Christ in deeper ways and to become conformed into His image is God's desire for us.
Alice> I'll bet you were the one who was the most blessed, right, Sue?
GUEST_SUE> Yes.
GUEST_SUE> God's word ministered to me, and we still have a wonderful bond.
[HOST_Carolann] the letting go of the past and the way things used to be and opening ourselves up to the "new normal" is a long process
GUEST_SUE> They asked me how do we respond to illness and trials.
GUEST_SUE> Yes, Carolann.
Ron> As we encourage others so we are encouraged
GUEST_SUE> In fact, that's a journey we need grace for--to accept what life is NOW.
[HOST_Carolann] absolutely
GUEST_SUE> But often He will do the most amazing things in our hearts when we yield fully to Him.
Alice> "Learning to be content in whatever state we are in.
[HOST_Carolann] amen
GUEST_SUE> yes.
GUEST_SUE> I often pray, Jesus I need you. And I have you.
Alice> Easy for me to say - harder for me to do -- even though i know it is true
Sharon> true
GUEST_SUE> I agree, Alice.
GUEST_SUE> We'll continue learning what contentment is about until we see Him face to face.
sueraec> When I am "down" I'll put on some Praise music. You can't remain depressed with Praise music playing loud!
[HOST_Carolann] life is not a sprint, it's a marathon
GUEST_SUE> yes!
GUEST_SUE> His grace is sufficient.
[HOST_Carolann] amen to that
GUEST_SUE> I also love the verse that says He is mindful we are but dust.
[HOST_Carolann] yes He knows our frame
Alice> Yes -- i blend right in with my furniture! (ha-ha)
[HOST_Carolann] that's cute Alice
Alice> Laughter is good medicine
sueraec> Me, too, Alice
GUEST_SUE> In Hebrews 5:7, it says "In the days of His flesh, He offered up both prayers and supplications with loud crying and tears to the One able to save Him from death, and He was heard...
GUEST_SUE> Even Jesus cried.
GUEST_SUE> But I agree, laughter is a gift from Him as well.
Alice> Yes -- He
sueraec> Patsy Clairmont, Barbara Johnson & Chondra Pierce all have the gift of laughter
[HOST_Carolann] This has been an excellent time Sue and we all thank you for your insights and your encouragement
Alice> oopS! He is there in all our emotions.....and has experienced them
holly> oh how true I truly enjoy the women of faith
[HOST_Carolann] I think we all came away with a little something to help us in our journey
GUEST_SUE> I've enjoyed meeting with all of you, and pray His blessings on you.
Sharon> yes, thanks Sue
[HOST_Carolann] thank you for enduring your health difficulties to be with us
sueraec> Thank you for sharing with us Sue
Alice> Thank you both, Sue and Carolann.
holly> thank you
[HOST_Carolann] thank you everyone for your being here and your participation
GUEST_SUE> Thanks for the joy of hearing about your lives and His presence with you.
Ron> Thanks Sue and Carolann
GUEST_SUE> Blessings, Ron.
sueraec> Thank you Carolann for your faithfulness
Sharon> yes
Alice> Sue, i appreciate your handout -- lots of good information. God bless you
[HOST_Carolann] it's my pleasure
GUEST_SUE> You're welcome.
Molly> Thank you Sue and thanks Carolann
Dana> Thank you Sue and Carolann. I have learned so much today. Dana
GUEST_SUE> Blessings, Molly.
[HOST_Carolann] anyone feel free to stay and chat together if you wish
GUEST_SUE> Take care, Dana.
[HOST_Carolann] but many have to leave and that is fine
GUEST_SUE> Thanks Carolann.
GUEST_SUE> Goodbye.
[HOST_Carolann] your welcome Sue
>> GUEST_SUE has left room #RestMinistries_Pro